Resurrecting the Autopsy: Benefits and Recommendations

Resurrecting the Autopsy: Benefits and Recommendations

PETER N. NEMETZ, Ph.D., C. MARY BEARD, R.N., M.P.H., DAVID J. BALLARD, M.D., Section of Clinical Epidemiology; JÜRGEN LUDWIG, M.D., Division of Pathology; ERIC G. TANGALOS, M.D., Division of Community Internal Medicine; EMRE KOKMEN, M.D., Department of Neurology; KAREL M. WEIGEL, R.R.A., Department of Administration; PAUL G. BELAU, M.D., Division of Pathology; WILLIAM M. BOURNE, M.D., Department of Ophthalmology; LEONARD T. KURLAND, M.D., Dr.P.H., Section of Clinical Epidemiology

Maintenance of high autopsy rates is associated with specific benefits, especially for clinical practice and for clinical and epidemiologic research. We have compiled and evaluated (on the basis of related costs and benefits) a comprehensive list of recommendations to resurrect the autopsy and reestablish it as a central contributor to medical practice, teaching, and research.

In a companion article, 1 we examined in detail the patterns of autopsy rates for a half century in Olmsted County, Minnesota, and identified the basic medical and socioeconomic variables t h a t may be associated with the autopsy decision. In this article, we discuss the specific benefits asso­ ciated with maintaining high autopsy rates, especially for clinical practice and for clinical and epidemiologic research at the Mayo Clinic, and we develop generalizable recommendations for reversing the declining rate of autopsies, not only within Olmsted County but also through­ out the United States.

BENEFITS OF THE AUTOPSY In some respects, it is remarkable t h a t a medical procedure with such a broad and multifaceted range of benefits as the autopsy should have experienced such a pronounced decline. 2 The following list briefly summarizes these benefits with respect to diagnostics, therapeutics, clini­ cal outcomes, public health, and epidemiology. Autopsies (1) play a critical role in quality control by providing confirmation, clarification, and correction of antemortem clinical diagnoses; (2) aid in the discovery of new or previously unrecognized diseases; (3) provide reassurance and potentially critical information for members of the family of the deceased pertaining to the identification of contagious disease, recognition of genetic disorders, potential organ availabil­ This investigation was supported in part by Research Grant ity, and peace of mind associated with knowl­ AR 30582 from the National Institutes of Health, Public edge of the cause of death; (4) contribute toward Health Service. the evaluation of diagnostic technologies and Address reprint requests to Dr. P. N. Nemetz at his current tests; (5) are an indispensable source of primary address: Policy Analysis Division, Faculty of Commerce, or corroborative evidence in cases of sudden, University of British Columbia, Vancouver, BC, Canada suspicious, or unexplained death; (6) play an V6T 1Y8. Mayo Clin Proc 64:1065-1076, 1989

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1066 BENEFITS OF AUTOPSY

important role in the evaluation of the efficacy of new drugs and their potential adverse effects; (7) can facilitate the evaluation of the inten­ tional and unintentional effects of treatment in the newly developing area of genetic engineer­ ing; (8) furnish valuable information about po­ tential risks associated with specific therapeutic techniques such as irradiation; (9) can generate information that leads to more effective suppor­ tive care in cases of cancer and could ultimately prolong patient survival; (10) provide essential information on disease manifestation that can­ not be provided from living subjects; (11) assist in the evaluation of new surgical techniques; and (12) assist in the assessment of new prostheses in such fields as cardiac and orthopedic surgery. In addition to these general benefits associ­ ated with the autopsy, two other categories are especially important to the practice of clinical medicine and epidemiology at the Mayo Clinic. Autopsies supply essential tissue for research, teaching, and transplantation. The autopsy plays a central role in providing tissues to such departments as ophthalmology, otorhinolaryngology, and orthopedics. The importance of autopsy tissue at the Mayo Clinic for the period 1982 through 1985 is shown in Table 1. Particu­ larly significant has been the role of autopsyobtained eyes for corneal transplantation; Table 2 shows the increasing demand for corneal tis­ sue during the period from 1976 through 1986 at the Mayo Clinic. The trend in this use is such that a shortfall in supply may occur unless remedial measures are undertaken to increase autopsy rates in the near future. Similarly strong sentiments with respect to the importance of the autopsy for teaching, re­ search, and medical and surgical care were expressed by the Mayo Ad Hoc Committee on Autopsy Review in 1974 and recently reaffirmed by the Mayo Autopsy Task Force Report (May 4, 1987) to the Clinical Practice Committee. Autopsies make substantial contributions to medical and epidemiologic research through studies on incidence and prevalence rates3 and testing of hypotheses for risk factors in the cause of diseases. In addition, autopsies can play a

Mayo Clin Proc, September 1989, Vol 64

Table 1.—Examples of Autopsy Tissue Use for Research, Teaching, and Transplantation at the Mayo Clinic, 1982 Through 1985* Type of tissue Dura Pituitary gland Diaphragm and psoas muscle Middle ears Eyes Trachea Brain Liver Adipose tissue Tendons and nerves Vertebrae

Samples (no.) 2,000 1,812 1,800 1,246 1,060 803 190 123 112 105 100

*Omitted from this list were 30 additional categories of autopsy tissue because the number of samples used dur­ ing the study period was fewer than 100 in each category.

crucial role in the identification and potential control of new epidemic diseases, one of the foremost examples of which is acquired immu­ nodeficiency syndrome (AIDS).2 The health sector must compete with other sectors of the economy for scarce resources, and within the health sector itself, important deci­ sions about the allocation of financial and hu­ man resources must be made among diseases and between prevention and treatment. Epi­ demiologic information is an essential prerequi­ site to the efficient and effective allocation of these resources. Of particular importance with respect to the declining autopsy frequency are studies on wide­ spread major conditions such as Alzheimer's disease, currently the fourth leading cause of death in the United States, which pose a prob­ lem in the areas of public health and policy. Estimates of the number of persons affected by this disease range from 1 to 4 million, either institutionalized in nursing homes and hospi­ tals or cared for at home. At an estimated cost of care in excess of $12 billion per year, this disease represents a considerable financial burden on a nation already beset by rapidly increasing medical costs. 46 As reported by Kokmen and associates,7 "Despite many advances in diagno-

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BENEFITS OF AUTOPSY 1067

Table 2 — C o r n e a l T i s s u e U s e at t h e Mayo Clinic, 1976 T h r o u g h 1986 Donor corneas from: Year

Autopsy

Live donors*

1976 1977 1978 1979 1980 1981 1982 1983 1984 1985 1986

61 75 104 88 83 116 151 199 195 174 155

1 1 0 0 3 6 9 4 5 4 9

Organ donors

Other eye banks

0 2 0 2 12 4 2 6 2 0 19

14 4 2 0 0 2 0 0 0 0 1

Corneas used in transplantation

At

Else-

Mayo

where

32 45 53 26 59 68 62 53 88 93 86

0 0 0 0 0 4 30 12 16 8 11

Corneas (no.) Total

76 82 106 90 98 128 162 209 202 178 184

Used in transplantation

32 45 53 26 59 72 92 65 104 101 97

*Eye removed because of neoplastic choroidal or orbital disease.

sis, autopsy is still required for diagnosis of Alzheimer's disease." Organs, organ systems, and tissues obtained at autopsy are fundamental resources for any research that considers the influence of normal aging and development on the anatomic and physiologic features of human systems. De­ tailed quantitative studies of "the normal" at various ages and stages of development are crucial for the understanding of perturbations caused by disease processes. Careful harvesting of tissues, their adequate preservation in con­ junction with detailed and appropriate clinical descriptions, and analysis of the source of tis­ sues are important for future generations of researchers who may be addressing questions that are not being considered at the present time. If autopsy material is not available, re­ search on aging or the pathogenesis of chronic diseases will be impossible. A good example is the study of cholinergic systems and their pa­ thologic derangements in Alzheimer's disease.8 A lack of corroborative autopsy studies can lead to difficulties with the publication of results of medical research and thereby impede the timely dissemination and exchange of impor­ tant research findings. Perhaps the most important contribution of autopsy studies to epidemiology at the Mayo

Clinic has been made through the Rochester Epidemiology Program Project (REPP). Estab­ lished in 1966 with funding from the National Institutes of Health, the REPP uses the Mayo diagnostic and surgical indexes and recordslinkage system 920 to produce population-based epidemiologic studies. The exceptional quality of this data base is attributable to its virtually complete longitudinal coverage of a geographi­ cally defined population since the beginning of the century. In the 23 years since its inception, Mayo physicians and visiting scholars associ­ ated with the REPP have produced almost 500 publications on a diverse range of subjects. The work has been focused on neurology, cardiovas­ cular diseases, and cancer but also includes at least 16 other general medical categories. The records-linkage system facilitates the genera­ tion of not only highly accurate incidence and prevalence rates but also studies on risk factors and cross-disease hypothesis testing. In numerous cases, the REPP has been able to generate the first population-based incidence rates for specific diseases, especially within the field of neuroepidemiology. This and similar achievements in the study of incidence of dis­ eases have often been made possible by the high level of autopsy confirmation at the Mayo Clinic. An integral part of this system are the tissue

1068 BENEFITS OF AUTOPSY

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storage facilities, which allow retrieval and diagnostic verification of cases for a period of several decades. The specific contribution of the autopsy to Mayo epidemiologic research is manifested in at least three ways: (1) by allowing a high level of case verification alone or in combination with

biopsy results; (2) by enhancing the comprehen­ siveness of case ascertainment through initial diagnosis of diseases or medical conditions (for example, such autopsy-related diagnoses account for 40% of all primary benign and malignant brain tumors and 45% of all cases of pheochromocytoma); and (3) by facilitating the testing of

Table 3.—Partial L i s t i n g of Autopsy-Assisted R e s e a r c h at t h e Mayo Clinic, b y T y p e of S t u d y Reference

Subject Case verification in studies of incidence, prevalence, and Amyotrophic lateral sclerosis Angina pectoris Bronchogenic carcinoma Dementia Hemispheric and brain-stem infarction Infective endocarditis Leukemia Malignant lymphoma Multiple myeloma Myocardial infarction Parkinsonism Stroke Sudden infant death syndrome Sudden unexpected cardiac death Enhancement of comprehensiveness of case ascertainment through initial diagnosis of condition at autopsy Colorectal cancer Encephalitis Intracranial neoplasms Occult carcinomas of the thyroid Pheochromocytoma Polycystic kidney disease Primary brain tumors Primary intraspinal neoplasms Renal cell carcinoma Hypothesis testing for disease interrelationship Cancer and seizure disorders Cancer after herpes zoster Cholelithiasis and carcinoma of the colon Colorectal polyps (>1 cm in diameter) and subsequent carcinoma Diabetes and coronary artery disease Diabetes mellitus and lymphoma Diabetes mellitus and subsequent cancer Gastric carcinoma after partial gastrectomy Hashimoto's thyroiditis and breast cancer Herpes zoster and diabetes mellitus Herpes zoster and multiple sclerosis Pernicious anemia and gastric carcinoma Rheumatoid arthritis and subsequent cancer Treatment for small colorectal polyps and subsequent carcinoma

survival

Autopsy 56 41 60 54 38 43 74 58 61 49 86 48 50 86 100 87 Initial diagnosis at autopsy 12 2 35 6 45 29 40 38 37

34 35 36 37 32 38 39 40 41 42 36 43 44 45 46 47

48 49 50 51 52 53 54 55 56 26 57,58 59 60 61 62,63 64 65,66 67 68 69 70 71 72

Mayo Clin Proc, September 1989, Vol 64

hypotheses about interrelationships among dis­ eases and medical conditions. Autopsy verification has played a critical role in studies on lupus erythematosus, 21 neural tu­ mors,22 multiple myeloma,23 carcinoma of the stomach,24 bronchogenic carcinoma,25 primary brain tumors, 26 malignant lymphoma,27 infec­ tions of the central nervous system,28 pancreati­ tis, 29 diabetes,30 sudden unexpected death in children and adolescents,31 and Alzheimer's dis­ ease,32·33 in addition to the diseases described in Table 3.

BENEFITS OF AUTOPSY 1069

sive remedial strategy must ultimately be driven by an understanding and commitment from the medical community, the government, and the general public. In an era when rapidly increasing costs of medical care threaten to jeopardize government budgeting processes and the availability of an acceptable minimal standard of care for all Americans, when senior citizens even more dependent on public support and with a growing burden of health needs constitute an increasing proportion of our population, and when new and major challenges to medical care and epidemiologic research are posed by such threats as Alz­ CONCLUSIONS AND heimer's disease and AIDS, the autopsy remains RECOMMENDATIONS A wide range of medical, legal, social, and eco­ one of the central pillars of modern medicine. nomic causes underlies the decline in autopsy rates; thus, any effort at amelioration must have ACKNOWLEDGMENT an equally broad focus.1 A synthesis of the We express our gratitude to the following per­ numerous and diverse recommendations for sons, who provided valuable assistance in the increasing autopsy rates, as suggested in the preparation of this article: Marilyn Billings, recent medical literature, is presented in Table Death Registrar, Olmsted County, Minnesota; 4. This tabulated information includes a brief Chu-Pin Chu, Dianne M. Shimek, James R. assessment of each of these proposals in a quali­ Wentz, and William F. Taylor, Ph.D., Depart­ tative cost-benefit framework. A three-point ment of Health Sciences Research; Patricia L. scale (low, medium, or high) is used to evaluate Kasey and John R. Ostrander, Division of Pa­ the "costs" of these recommendations, including thology; and Sarah Lehman, Vancouver, British their direct financial burden and the difficulty of Columbia, Canada. their implementation. The "benefits" are as­ sessed in terms of the magnitude of their antici­ pated effect and the time scale for their imple­ REFERENCES 1. Nemetz PN, Ballard DJ, Beard CM, Ludwig J, Tanmentation. Because the evaluation of the pro­ galos EG, Kokmen E, Weigel KM, Belau PG, Bourne posed policy measures in Table 4 must be largely WM, Kurland LT: An anatomy of the autopsy, subjective, the general criteria used in formulat­ Olmsted County, 1935 through 1985. Mayo Clin Proc 64:1055-1064, 1989 ing this assessment are outlined in Table 5. 2. Nemetz PN, Ludwig J, Kurland LT: Assessing the In total or in part, these multifaceted recom­ autopsy. Am J Pathol 128:362-379, 1987 mendations can provide a comprehensive "pro­ 3. McFarlane MJ, Feinstein AR, Wells CK, Chan CK: gram for the nation" to resurrect the autopsy The 'epidemioloic necropsy': unexpected detections, demographic selections, and changing rates of lung and reestablish it as a central contributor to cancer. JAMA 258:331-338, 1987 medical research, teaching, and practice. As 4. Schoenberg BS, Okazaki H, Kokmen E: Reduced indicated, some of these recommendations could survival in patients with dementia: a population study. Trans Am Neurol Assoc 106:306-308, 1981 have a direct, immediate, and salutary influence 5. Terry RD, Katzman R: Senile dementia of the Alz­ on the rate of autopsies; others, in contrast, by heimer type. Ann Neurol 14:497-506, 1983 raising the visibility of the autopsy and commu­ 6. Specific protein found in brains of Alzheimer's dis­ ease patients. The New York Times, Apr 25, 1986, nicating its value more clearly to both medical pl5 and nonmedical communities, would lead to a 7. Kokmen E, Offord KP, Okazaki H: A clinical and more favorable long-term acceptance of this autopsy study of dementia in Olmsted County, Min­ procedure. The implementation of a comprehen­ nesota, 1980-1981. Neurology 37:426-430, 1987

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Table 4.—Partial Listing of Recommendations for Increasing Autopsy Rates

Target General public

General focus Public education

Autopsy consent

Autopsy feedback

Medical community

Medical research, including epidemi­ ology

Specific recommendation Incorporate discussion of autopsy benefits into health letters from private institutions (for example, "Mayo Clinic Health Letter," "Harvard Medical School Health Letter") Use government brochures sent to recipients of Medicare, Medicaid, and other healthrelated programs to discuss benefits of the autopsy Incorporate autopsy benefit information in hospital bro­ chures to patients Provide information on the value of the autopsy to journals direct­ ed toward the aged and retired Provide estate planners with brochures on the autopsy Tie autopsy requests more closely to legislation for organ donation Reverse onus of consent, so that an autopsy is permitted unless family objects Require autopsy request as part of hospital admission procedure Give relatives the right to require an autopsy (as is current prac­ tice in Finland) Use professional liaison, such as a specially trained nurse, social worker, or physician's assis­ tant, to make coordinated con­ tact with bereaved families Schedule postautopsy confer­ ences with surviving family members Provide guidelines to physicians for talking to bereaved families Require a minimal autopsy rate in grant funding Develop an automated encoding and retrieval system for autopsy data for local or national use Develop a national computer autopsy data base to increase the dissemination and value of autopsy data Formulate national policies to modernize and promote use of the autopsy Promote use of updated autopsy protocols for medical research, particularly in cancer and in cardiovascular, occupational, and infectious diseases

Reference

Costs Difficulty Direct of implemencosts tation

Benefits Magnitude of effect

Time until effect

Low

Low

Low

Longterm

Low

Low

Low

Longterm

73

Low

Low

Low

Longterm

74

Low

Low

Low

Longterm

74

Low

Medium

Low

Longterm

Low

High

Medium

Longterm

75,76

Low

High

High

Shortterm

77

Low

Medium

Medium

78

Low

High

Medium

Shortterm Shortterm

74,75, 79

Medium

Medium

Medium

Longterm

75,76, 80,81

Low

Medium

Low

Longterm

82

Low

Low

Medium

Longterm

83*

Low

High

High

Shortterm Longterm

Medium

84

High

Medium

85-87

High

High

85,86

Medium

Medium

85

Medium

Medium

Medium

Longterm

Medium

Longterm

Medium

Longterm

Mayo Clin Proc, S e p t e m b e r 1989, Vol 64

BENEFITS OF AUTOPSY

1071

Table 4.—Continued Costs Target

General focus

Medical community (cont)

Medical student education

Medical practice

Autopsy economics

Specific recommendation

Reference

Direct costs

Benefits

Difficulty of implemen­ tation

Magnitude of effect

Time until effect

Include demographic data sets in autopsy reports Introduce random selection of autopsy in order to reduce bias in quality assessment and epidemiologic findings

86

Low

Medium

Low

88,89

Medium

Medium

Medium

Increase the emphasis in the curriculum on the benefits of the autopsy Reintroduce autopsy require­ ments into undergraduate and graduate medical programs Reintroduce autopsy percentage criteria as part of medical school accreditation

75,79

Low

Medium

Medium

Longterm

85,86, 90,91

Medium

High

Medium

Longterm

85t

Low

High

Medium

Longterm

76,85

Low

Medium

Medium

Shortterm

92

Low

Low

Low

Longterm

93

Low

Medium

Low

Longterm

t

High

High

High

Shortterm

85,86t

Medium

High

Medium

Longterm

91§

Medium

High

High

Shortterm

77,85, 86,94, 95

High

High

High

Shortterm

96,97

Medium

High

Medium

Longterm

88,98

Medium

Medium

High

Shortterm

99

High

High

Medium

Longterm

Reestablish a minimal autopsy percentage by the Joint Commission for Accreditation of Hospitals Emphasize use of h u m a n tissue for research and transplanta­ tion Forward appropriate autopsy findings to a committee for potential revision of patient care practices Seek a specific diagnosisrelated group (DRG) descriptor for the autopsy Link the autopsy to the riskquality assurance role of the DRG system Negotiate on a hospital-byhospital basis direct cash incentives for pathologists to conduct autopsies Recognize the autopsy as a phy­ sician service, billable on a "reasonable charge basis" under part B of Medicare, or adopt other specific methods of reimbursement Encourage medical institutions to self-finance autopsies to lower risk of malpractice cases and awards (alterna­ tively, hospitals could propose sharing these costs with insurance carriers on grounds of mutual benefit) Encourage insurance industry to provide discount on liability premiums to clinicians who obtain high autopsy rates on deceased patients Include the autopsy as a cost of research and education

Longterm Longterm

1072 BENEFITS OF AUTOPSY

Mayo Clin Proc, S e p t e m b e r 1989, Vol 64

Table 4.—Continued

Target

General focus

Medical com­ munity (cont)

Physician education

Nonmedical support person­ nel and organ­ izations

Nursing homes

Specific recommendation

Reference

Costs Difficulty Direct of implemencosts tation

Benefits Magnitude of effect

Time until effect

Reduce costs in various ways— for example, do problemoriented autopsies in selected cases, obtain frozen sections when they will suffice or pend­ ing a decision about what is to be done with retained material, do regional autopsies in the case of small hospitals, or use the pathology assistant as a professional prosector

100

Low

Low

Medium

Longterm

Institute special programs to help physicians counsel families Increase flow of information within hospitals and clinics on the value of autopsies (for example, use of clinical abstract forms, weekly autopsy conferences, expedi­ tious autopsy reporting, anno­ tated histograms of diagnostic results for effective dissemina­ tion of information, or consulta­ tive partial autopsy reviews) Establish international "autopsy club" as forum for dissemina­ tion of information Survey academics in medical community to determine their perception of autopsy programs G r a n t credit for continuing education from attendance at autopsies Alter training of pathologists in the direction of more specialization in anatomic pathology and further subspecialization in various organ systems, as in internal med­ icine, to provide more infor­ mation from the autopsy to clinicians and surgeons

86

Medium

Medium

Low

Longterm

85,86*

Medium

High

Medium

Longterm

86

Low

Low

Low

Longterm

86

Medium

Low

Low

Longterm

101

Low

Medium

Low

Longterm

102

Medium

High

Medium

Longterm

Low

High

Medium

Longterm

Low

High

High

Longterm

Medium

High

Low

Longterm

Make autopsy counseling a condition of state licensing or of federal reimburse­ ment programs Make a minimal level of autopsies a condition of federal reimbursement programs Promote the affiliation of nursing homes with academic organizations to create enhanced opportunities for teaching and research

103

MayoClin Proc, September 1989, Vol 64

BENEFITS OF AUTOPSY 1073

Table 4.—Continued

Target

General focus

Nonmedical... (cont)

Insurance industry

Others

Other organ­ izations

Govern­ ment Employers and unions

Specific recommendation Link a minimal autopsy rate to coverage for institutions or individuals on the grounds that the additional information provided by the autopsy can lead to fewer malpractice cases and awards and ultimately to lower insurance costs Produce videotapes for social workers, clergy, and hospital administrators to demonstrate the value of the autopsy Sponsor joint meetings between pathology societies and appro­ priate agencies to enhance educa­ tion on the autopsy Encourage private sector employ­ ers and unions to include autopsies in their fringe benefit programs

Reference

Costs Difficulty Direct of implemen­ costs tation

Benefits Magnitude of effect

Time until effect

96,97, 104

Low

High

High

Longterm

93

Medium

Medium

Low

Longterm

83

Low

Medium

Low

Longterm

105

High

High

Medium

Longterm

*Cartwright H: Personal communication (Oct. 31, 1986). tChavigny K: Personal communication (Nov. 3, 1986). tSinton E: Personal communication (Nov. 10, 1986). §Lundberg G: Personal communication (Nov. 7, 1986).

Table 5.—Evaluative Criteria U s e d i n A s s e s s i n g P o l i c y R e c o m m e n d a t i o n s To I n c r e a s e t h e A u t o p s y R a t e Rating

Direct costs

High

Substantial expenditures of public or private funds (or both) seem to be required

Medium

Only a modest expenditure of funds seems to be required

Low

No cost or only token expenditures seem to be involved

Difficulty in implementation Likely to involve use of substantial nonmonetary resources (for example, specially trained personnel) or to encounter consider­ able or insurmountable institutional resistance Likely to involve only modest use of nonmonetary resources (for example, specially trained personnel) or to encounter some institutional resistance t h a t can be overcome with reasonable effort Likely to involve few nonmonetary resources (for example, specially trained personnel) and little or no institu­ tional resistance

Magnitude of effect

Time until effect

Result is likely to increase autopsy rates substantially

An immediate effect on autopsy rates is expected

Shortterm

Result is likely to have a mod­ est, although noticeable, effect on autopsy rates

Not applicable

Not applicable

Result is likely to have minimal or no effect on autopsy rates

A delayed effect (for example, several years) on autopsy rates is expected

Longterm

Time scale

1074 BENEFITS OF AUTOPSY

8.

9. 10.

11.

12.

13. 14.

15.

16.

17.

18. 19.

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21.

22.

23.

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25. 26. 27.

28.

29.

30. 31. 32.

33.

34.

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35.

36.

37.

38.

39.

40.

41.

42. 43.

44. 45.

46.

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1076 BENEFITS OF AUTOPSY

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