EDITORIALS A BICENTENNIAL EDITORIAL
On the Governance of Health Care HEALTH CARE may well be the largest industry in the nation, and it is now the first industry in the nation that the federal government is attempting to regulate in toto. This would seem to merit some examination in the bicentennial year. The issue is not yet settled although the advantage is clearly with the federal government. In any case the outcome will profoundly affect not only health care but the nation itself. By way of background, the national interest in health care appears to have begun shortly after World War II when apparently unlimited dollars had helped to bring about dramatic achievements in both medicine and surgery. The Manhattan Project, also with unlimited dollars, had produced the atomic bomb which had ended the war-also dramatically. Given enough dollars it seemed that science could do anything. This belief led to a national commitment to the support of medical research which was wisely and productively administered primarily through the National Institutes of Health. The advances were significant, always highly publicized and often overstated. This gave rise to public pressures to bring more of this progress in medical research into day-today patient care. And once again it was assumed that all it would take to accomplish this would be dollars. But this was not to be so. Since 1965 federal dollars have been poured into health care with far less than expected improvement in the nation's health. Rather the overall result has been disaffection, dissatisfaction and runaway costs. Since there is no possibility of turning back (it would be unthinkable to take health care away from people) the federal government finds itself with a precarious hold on the tail of a monster that is largely of its own and the public's creation. Unfortunately, but through no fault of its own, the federal government has a rather undifferentiated response to any unsolved or troublesome problems that it cannot or does not wish to ignore.
Its response is to enact laws, make regulations and then bring its power to bear to force compliance. Often this works, but not always. When it does not, the undifferentiated response of the federal government is the same-pass more laws, make more regulations and try harder than ever to force compliance. This is what has happened in health care, and so far it has not been working well enough. As could have been predicted, the federal government is now mounting an all out effort by these same means to regulate every aspect of the health care industry-its personnel; its supplies and equipment; its facilities; its education, training and research, and its services and delivery systems. In short it seeks to regulate every facet of health care and the health care industry, because it really knows no other way to address so difficult and urgent a problem. It is suggested that not only is this approach not working but, further, that it can never work well, if at all. Why? No doubt there are many reasons. A principal one may be that the nature of the health care system is such that it just cannot be regulated from outside of itself. The health care system of this nation is not the nonsystem that has been alleged. Rather it is an immensely complex and highly interdependent technological, social, economic and even political system. Anything that affects one segment quickly affects all the others. Its hallmark is the progress and change that are going on all the time. The health care system and its parts change even while they are being studied and even while standards are being developed to regulate them. This applies to facilities, education and research, as well as to
personnel, patient care services, supplies, equipment and delivery systems. Fixed laws and well defined and well standardized government regulations are simply ill suited to govern such a dynamic and vital system. Laws and regulations
just cannot be made or changed quickly enough to do the job. And the degree of standardization THE WESTERN JOURNAL OF MEDICINE
409
EDITORIALS
that is necessary for efficient bureaucratic administration is in fundamental conflict with the nature of this kind of system and the way it has to operate. Is there any analogy that might be a clue to what might be done? Perhaps there is. We might compare the health care system of today and the public pressures upon it with a biological system that lives and functions in relationship with its internal and external environments. There is much that is similar. In many ways the health care system is truly a living system. It is complex. Its parts are independent and autonomous in one sense, yet uiterly interdependent in another. The system is always changing, and is often changed even by the process of being studied. It is affected by changes and forces in its environment and must adapt successfully to these to remain healthy and to function smoothly. It is notable that the governance or regulation of a biological system is primarily internal. It is external only in most unnatural situations and then the methods are crude at best-as when a cardiac pacemaker is implanted to regulate the heart beat. Certainly there is no example of every aspect of a complex biological system being successfully regulated from outside the system. It is unlikely that there will be any sudden change in the approach of the federal government in its attempt to regulate the health care industry. It also seems unlikely that this approach can result in anything but an enormously increased internal friction (cost) within the system and reduced vitality and effectiveness (quality). The lesson to be learned will be both costly and painful to all concerned. If the analogy to a biological system is correct, the present approach can only fail, and a new one will sooner or later be needed. One can envision what this might be. It will entail (1) some means of internal governance within the health care industry which will recognize the relatively autonomous and independent parts within an increasingly interdependent system, (2) a means of adapting the internal environment of the health care system or industry to meet the requirements of the external environment of health care and (3) a new relationship with government which will allow the people in the health care industry some autonomy to govern themselves and to find solutions to the problems of health care as these may be defined-and this with the assistance of government rather than by direction from government. 410
MAY 1976 * 124 * 5
In a sense this issue, which is now being hammered out in the crucible of health care, is whether the people, as represented in this case by the health care industry in all of its facets, can govern themselves within a framework of the requirements of an increasingly interdependent technologic, social, economic and political society. Or will they have to be governed and told what to do by persons in government who will rule them by passing laws and creating regulations-and using the power of the federal government to enforce them? This actually gets down to whether the people (and the health care industry is a substantial segment of the population) are to be the masters or the servants of their government. The writers of the Constitution could hardly have foreseen how growing technological, social, economic and political interdependence would-so challenge and threaten freedom and independence by this bicentennial year. The challenge and the threat are great indeed, but we can meet them if we have the will to do so. -MSMW
Prenatal Diagnosis and Genetic Counseling MEDICAL GENETICS has moved from an esoteric hobby of a few academic physicians to a variety of practical clinical applications. As young people acquire better information about human biology by courses in high schools and colleges and via the media, physicians increasingly face questions regarding problems in human genetics. The article by Dumars and associates in this issue of the JOURNAL attempts to provide some background and guidelines. Genetic diseases can be divided into three broad categories: (1) Chromosomal disorders such as Down's syndrome, Turner's syndrome and others. Constitutional chromosomal disorders that affect chromosomes of all body cells must be differentiated from acquired chromosomal lesions in leukemia or other malignancies where abnormal chromosomes are only seen in the neoplastic tissue. (2) Mendelian diseases such as adult polycytic kidney disease, Huntington's chorea, sickle
On the Governance of Health Care HEALTH CARE may well be the largest industry in the nation, and it is now the first industry in the nation that the federal government is attempting to regulate in toto. This would seem to merit some examination in the bicentennial year. The issue is not yet settled although the advantage is clearly with the federal government. In any case the outcome will profoundly affect not only health care but the nation itself. By way of background, the national interest in health care appears to have begun shortly after World War II when apparently unlimited dollars had helped to bring about dramatic achievements in both medicine and surgery. The Manhattan Project, also with unlimited dollars, had produced the atomic bomb which had ended the war-also dramatically. Given enough dollars it seemed that science could do anything. This belief led to a national commitment to the support of medical research which was wisely and productively administered primarily through the National Institutes of Health. The advances were significant, always highly publicized and often overstated. This gave rise to public pressures to bring more of this progress in medical research into day-today patient care. And once again it was assumed that all it would take to accomplish this would be dollars. But this was not to be so. Since 1965 federal dollars have been poured into health care with far less than expected improvement in the nation's health. Rather the overall result has been disaffection, dissatisfaction and runaway costs. Since there is no possibility of turning back (it would be unthinkable to take health care away from people) the federal government finds itself with a precarious hold on the tail of a monster that is largely of its own and the public's creation. Unfortunately, but through no fault of its own, the federal government has a rather undifferentiated response to any unsolved or troublesome problems that it cannot or does not wish to ignore.
Its response is to enact laws, make regulations and then bring its power to bear to force compliance. Often this works, but not always. When it does not, the undifferentiated response of the federal government is the same-pass more laws, make more regulations and try harder than ever to force compliance. This is what has happened in health care, and so far it has not been working well enough. As could have been predicted, the federal government is now mounting an all out effort by these same means to regulate every aspect of the health care industry-its personnel; its supplies and equipment; its facilities; its education, training and research, and its services and delivery systems. In short it seeks to regulate every facet of health care and the health care industry, because it really knows no other way to address so difficult and urgent a problem. It is suggested that not only is this approach not working but, further, that it can never work well, if at all. Why? No doubt there are many reasons. A principal one may be that the nature of the health care system is such that it just cannot be regulated from outside of itself. The health care system of this nation is not the nonsystem that has been alleged. Rather it is an immensely complex and highly interdependent technological, social, economic and even political system. Anything that affects one segment quickly affects all the others. Its hallmark is the progress and change that are going on all the time. The health care system and its parts change even while they are being studied and even while standards are being developed to regulate them. This applies to facilities, education and research, as well as to
personnel, patient care services, supplies, equipment and delivery systems. Fixed laws and well defined and well standardized government regulations are simply ill suited to govern such a dynamic and vital system. Laws and regulations
just cannot be made or changed quickly enough to do the job. And the degree of standardization THE WESTERN JOURNAL OF MEDICINE
409
EDITORIALS
that is necessary for efficient bureaucratic administration is in fundamental conflict with the nature of this kind of system and the way it has to operate. Is there any analogy that might be a clue to what might be done? Perhaps there is. We might compare the health care system of today and the public pressures upon it with a biological system that lives and functions in relationship with its internal and external environments. There is much that is similar. In many ways the health care system is truly a living system. It is complex. Its parts are independent and autonomous in one sense, yet uiterly interdependent in another. The system is always changing, and is often changed even by the process of being studied. It is affected by changes and forces in its environment and must adapt successfully to these to remain healthy and to function smoothly. It is notable that the governance or regulation of a biological system is primarily internal. It is external only in most unnatural situations and then the methods are crude at best-as when a cardiac pacemaker is implanted to regulate the heart beat. Certainly there is no example of every aspect of a complex biological system being successfully regulated from outside the system. It is unlikely that there will be any sudden change in the approach of the federal government in its attempt to regulate the health care industry. It also seems unlikely that this approach can result in anything but an enormously increased internal friction (cost) within the system and reduced vitality and effectiveness (quality). The lesson to be learned will be both costly and painful to all concerned. If the analogy to a biological system is correct, the present approach can only fail, and a new one will sooner or later be needed. One can envision what this might be. It will entail (1) some means of internal governance within the health care industry which will recognize the relatively autonomous and independent parts within an increasingly interdependent system, (2) a means of adapting the internal environment of the health care system or industry to meet the requirements of the external environment of health care and (3) a new relationship with government which will allow the people in the health care industry some autonomy to govern themselves and to find solutions to the problems of health care as these may be defined-and this with the assistance of government rather than by direction from government. 410
MAY 1976 * 124 * 5
In a sense this issue, which is now being hammered out in the crucible of health care, is whether the people, as represented in this case by the health care industry in all of its facets, can govern themselves within a framework of the requirements of an increasingly interdependent technologic, social, economic and political society. Or will they have to be governed and told what to do by persons in government who will rule them by passing laws and creating regulations-and using the power of the federal government to enforce them? This actually gets down to whether the people (and the health care industry is a substantial segment of the population) are to be the masters or the servants of their government. The writers of the Constitution could hardly have foreseen how growing technological, social, economic and political interdependence would-so challenge and threaten freedom and independence by this bicentennial year. The challenge and the threat are great indeed, but we can meet them if we have the will to do so. -MSMW
Prenatal Diagnosis and Genetic Counseling MEDICAL GENETICS has moved from an esoteric hobby of a few academic physicians to a variety of practical clinical applications. As young people acquire better information about human biology by courses in high schools and colleges and via the media, physicians increasingly face questions regarding problems in human genetics. The article by Dumars and associates in this issue of the JOURNAL attempts to provide some background and guidelines. Genetic diseases can be divided into three broad categories: (1) Chromosomal disorders such as Down's syndrome, Turner's syndrome and others. Constitutional chromosomal disorders that affect chromosomes of all body cells must be differentiated from acquired chromosomal lesions in leukemia or other malignancies where abnormal chromosomes are only seen in the neoplastic tissue. (2) Mendelian diseases such as adult polycytic kidney disease, Huntington's chorea, sickle
