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Quality of Care and the Health Needs of the Elderly Patient Avedis Donabedian The aged are Everyman. They share in the human condition in ah its aspects, all its vicissitudes. They are rich and poor, weld and ill, com- petent and disabled, resilient and Untie, enlightened and ignorant, au- tonomous and dependent, familied and bereft, involved and isolated, con- tented and troubled, fun of hope and despairing. In aU these ways the aged are as we aD are. It is undikely, therefore, that what they need or look for shad be, in any fundamental way, different from that which we aU need or wish to have. Yet, we aD know that the aged are also different. They are different in the odds that they face of experiencing He evils and blessings of living, and in the future duration of life itself. Even at Weir healthiest, the aged are vulnerable and fragile; they have a smaller fund of reserves to draw upon, whether these reserves be physiological, psychological, so- cial, or economic. Should an old person fan off the razor's edge into disaster, recovery is seldom complete. There is a bias toward irreparabil- ity in the misfortunes of the aged. And these misfortunes, when they occur, tend to be many and interconnected, forming a constellation of physical, social, and economic ins Cat kindle and fuel each other. So, the ins of the aged persist and they progress in a hardly containable decline into debility, disablement, dependency, and disengagement. In the end, Be aged may become too passive, too accepting of all they suffer, even severe illness tending to masquerade in less alarming, though treacherous, masks. Therefore, heady care for the aged, if it is to be successful, must overcome the many handicaps Tat the aged more often face. Even the meaning of quality may have to be altered to adapt to Me particular 3

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4 AVEDIS DONABEDIAN circumstances and perspectives of the aged. Appropriateness and adapta- tion win be, therefore, my central theme in this discourse. But, since these properties are also necessary attributes of quality in ad health care, hope to show that what is distinctive of quality In caring for the aged is only a set of differences in emphasis, rather than a radical departure. In seeking quality for the aged, we shad rediscover the pnnciples that govern quality for us an. THE MEANING OF QUALITY ~ must begin with the meaning of quality itself, since we must understand and agree upon the property Hat we seek before we can take steps to find it. Quality, as an attribute of heady care, is usually held to be propor- tionate to the improvements in health that health care can achieve. But, because our ability to achieve improvements in health is limited by the state of our knowledge and our technology, quality is more realistically definable as a ratio of improvements achieved by any instance of health care to He improvements Hat could have been achieved by He best health care. If this ratio is taken to be a measure of"effectiveness," He property of "effectiveness" and He property of "quality" become the same. By defining quality as effectiveness, in the manner described, we lose sight of the means that we use to achieve improvements In health We seem to say that the means do not matter, so long as the objective of health improvement is attained. But this is hardly the case. Not all the means are equally approved; some may even fail to be legitimate. We should also entertain He possibility Hat the greatest achiev- able improvement In health may be, in some circumstances, an inappro- pnate objective. It is best, therefore, to define quality as the attainment of desirable objectives using legitimate means. If so, we need to examine, in turn, the objectives of health care and the means for attaining them. THE OBJECTIVES OF HEALTH CARE For the sake of simplicity I shah accept the objective of health care to be an improvement in health, putting aside, for now, the uses of heals itself. In order to assess the quality of care we would need to know, therefore, the natural history of morbid conditions when untreated, when treated by the "best care," and when treated by the particular example of

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CARE AND [lEALTHNF5Flr)s OF THE F7J)ERLY PATIENT s care that we wish to provide or to assess. With regard to Al these items of information, our knowledge is often inadequate. And considering how complex and how unstable the problems of the aged are, ~ would expect that, in their case, our ability to make valid judgments is even more subject to question. Yet, seeing how little the aged have in reserve, and how much even small losses must count relative to that smaller balance, a precise accounting of prospects becomes even more necessary to a wiser choice. Knowledge contributed by He health care sciences is, therefore, the rock upon which aR quality and aU assessments of quality must rest. We need to know more about the natural course of illness and the relative efficacy of alternative methods of management in the aged, as in everyone else. Next, we need to come to an understanding on what we mean by "health" Be several components that make it up, the many aspects of performance that it subsumes. Consensus on these matters is not easy to achieve, and it may be particularly difficult for us to agree where the aged are concemed. We disagree on what is inevitable and what is remediable in the manifestations of aging; we are unsure to what standard of health the perfo'Tnance of the aged is to be compared. Then, there is the problem of valuation. Because measurement always implies valuation, it may be foolishness to speak of objective measurement. Rather, we may need to consider whose valuations deter- mine the measure: those of the health care practitioner, those of the patient, those of family members, or those of some social instrumentality, more or less legitimate. It is generally accepted that, in choosing among alternative meth- ods of management, the valuations of the patient are paramount or, at the very least, are to be seriously considered. Yet, even if we were willing to make a determined effort to do so, our ability to obtain fully informed valuations is limited at best. How are patients to assess future conse- quences that they have not personally or vicariously experienced? How are they to weigh rather small differences in probabilities for which personal exposure provides no familiar counterpart? When intellectually impaired or emotionally withdrawn, the aged are even less able to accomplish these tasks. And should one or more family members undertake to do so, we cannot be sure whether the judgments made are those that the patients would have made or whether, out of selfishness or a sense of duty, those judgments undervalue or overvalue the patients' prospects.

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6 AVEDIS DONABEDIAN In the choice of alternative methods of management, it is, of course, the individual patient's preferences that matter. But, it would be interesting also to know if old age, as a shared attribute, introduces biases in the valuation of survival and in the quality of life during the period survived. It would not be surprising if the lowered expectations of survival and good function that ordinarily accompany aging were to influence the valuations that the aged place on alterations in these expec- tations. If so, interventions that represent the highest quality might differ, on the average, for the aged as compared with others. These considerations would also influence the judgment passed by patients on the present consequences of past care. We often hear that these expectations are frequently too high. If so, the patient may not have been properly informed. And, on the contrary, it is also possible that the patient is content only out of ignorance of how inferior the results exper~- enced are, compared with what might have been reasonably expected. It follows that a weld-informed, assertive patient is a key player In the process of defining and assessing the objectives of care. The patient's role, as we shad see, is at least equally critical in the choice and assess- ment of the means for achieving these objectives. THE MEANS FOR ATTAINING THE OBJECTIVES OF CARE ~ shad discuss the means for attaining the objectives of care under five headings: (~) access, (2) the practitioner's contributions to care, (3) the patient's own contributions to care, (4) the contributions of health care programs and institutions, and (5) money. ~ realize that by including access in this particular list ~ do violence to me purity of my classification. Nevertheless, it is important to begin with access to care because, without initial access, no care can be given and, without continued access, care is prematurely discontinued. We must be disturbed, therefore, when we hear Hat gains in access achieved during the recent past are now in danger of being lost. The aged, especially if also poor, are apparently among those affected by this rever- sal. On particular, we need to know if the methods of cost containment Hat seem to single out the old, because they are the beneficiaries of publicly financed programs, have had an adverse effect on the duration, content, and outcomes of care. The duration and content of care are, of course, matters that health care practitioners have traditionally controlled, although recently other

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CARE AND HEALTH NEEDS OF THE Fill )ERLY PATINA 7 agencies have intruded more and more on the practitioners' prerogatives in this domain. StilU, the practitioners' contributions to care, irrespective of whether the contributors are fully autonomous or partly constrained, are the key determinant of quality. It is customary to distinguish two components in the conical role of practitioners. One is the management of technical care and the other the management of the personal interaction with the patient. For this occasion, ~ shad add a third: the management of the patient's social situation. Technical care is, itself, divisible into components; these include knowledge, judgment, and skill. If I may be allowed a brief digression, I would like to remark that in our usual assessments of process, based upon medical records, we are more able to evaluate knowledge and judgment than skin. Skillful execution usually reveals itself in the health outcomes achieved. More to the point, in our present context, are the peculiar demands that the medical problems of the aged, as already described, make on the technical competence of practitioners. Special preparation and experi- ence are needed. That means more attention to the education and training of clinical specialists in the field. It means a larger emphasis on learning about care for the aged in the education and training of health care generalists and specialists of every kind. It means the reorganization of care so that the aged, at least when very in, have the benefit of specialized attention, either directly through care by specialists in specialized units, or indirectly through established policies and procedures for consultation and support to generalists who assume the burden of primary care. The second component of professional care is the management of the personal interaction with patient and family. This includes respect, concern, personal interest, courtesy, understanding, privacy, conf~dential- ity, and a single-minded devotion to the patient's interests. Meticulous attention to the patient's wishes and values is particularly important. If these are legitimate, the practitioner is under an obligation to comply. If they are not, the practitioner is obligated to explain the matter and arrive at an ethically defensible conclusion. To an audience as expert as this ~ need not expatiate upon the central importance of the patient-practitioner interaction to the quality of care. In this respect, we owe the aged what we owe to ah our patients. But, the aged, if frail and handicapped, will require even more time and attention. The aged, deeply rooted In times long past, and sometimes also

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8 AVEDIS DOIVABEDIAN in a possibly alien cultures are pardal strangers in this more tumultuous present The management of the patient's social situation is the third com- ponent in the contributions of the practitioners to care. Once again, this is a responsibility to be faced In caring for an patients. It assumes greater importance when the patient is older because of He social and economic vuinerabilides to which I have alluded already. In almost an the practitioner's ministrations the contributions of the patient are, of course, of cndcal importance. The patient provides information necessary for diagnosis and management, doing so at the initial encounter and throughout the care that follows. Without Be pa- tient's participation, Me practidoner's recommendations are implemented poorly or not at all. The patient has an additional responsibility to pursue a more healthful mode of living. In some cases, me aged may be more wining to make the modifications necessary to improve their threatened prospects and more able, by virtue of circumstances, to take the time to do so. At other times, the aged may be unable to communicate or collabo- rate, and, because of their relative isolation, there may be no one else to speak or act effectively on their behalf. As a result, plans for care Cat might earn admiration when the patient's medical record is reviewed do not translate into improvements in health because the patient has failed to cooperate. ~ shah add the contributions of institutions and organized programs to this catalogue of means for achieving the objectives of quality. ~ do so only to remind ourselves of the critical importance of social effort in providing the resources that enable patients to gain access to care and make it possible for practitioners and patients to collaborate effectively in the production of care under circumstances that are satisfying to both. The critical resource, of course, is money, an instrumentality so important that I have given it a separate position in this list. The purpose of care for the aged, as of course, for everyone else, is appropriateness, which is the precise matching of care to medical need. Without it, we may have too little or too much. In the technical care of the aged, redundancy and surfeit in the process of care are particularly at~ac- tive responses to uncertainty in the practitioners and to nonresponsiveness or inevitable fatality in the patients' illness. Our too-ready recourse to prodigal technical care is also abetted by a widespread tendency to "medi- calize," as some have said, so many of our problems. Thus, we create spunously "medical" representations of problems that could be more

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CARE AND HEALTH NF-F-OS OF THE Fi:r)E.RLY PATIENT 9 amenable to successful management by means simpler and less costly than outpourings of technical care. The solutions to this misapplication of technology are, first, a level of technical expertise sufficiently high to recognize the limits of technology; second, Me availability of expertise in the alternative modalities of care; and Bird, the presence of the social mechanisms that permit a choice of the most appropriate modality of care. For some reason, we have provided more readily for highly techni- cal health care than for health care that is less dependent on technology; and we have been more wiring to provide for heath care than for care that does not fit so easily in that exalted category. As soon as we can, let us forsake this foolishness. We can, then, pursue magnum improvements in health at a cost that we may perhaps be able to afford. There are those who ten us, however, that maximum effectiveness, even if it is obtained with due regard to efficiency, is not He proper goal for a society to pursue. This is because, in any given situation, these critics say, Were are elements of health care that, though useful, are too costly in comparison to the improvements in health that they can be expected to confer. Therefore, we are told, optimum effectiveness, not maximum effectiveness, should be Be goal. The choice between maximum effectiveness and optimum effec- tiveness as the proper goal for health care policy is not confined, of course, to the aged. But the welfare of the aged is peculiarly sensitive to the consequences of the choice. The aged are usually unemployed and, therefore, get very much undervalued in methods that set a monetary value on me benefits of care. Besides being "unproductive" in this sense, the aged tend to need larger amounts of care and, if kept alive even though in, win require more and more in the future. Thus, in addition to being unproductive, the aged are a drain on our collective treasure. And even if the rules that govern the availability of care were to reject a crass eco- nomic calculus and, instead, value the life and weld-being of the aged as highly as those of anyone else, the much shorter life expectancy of the aged would give them much less to bargain with. Following these baleful lines of reasoning, the aged would be denied useful interventions that would be available to a younger person with the same disability. In some cases, no care might be thought worthwhile beyond Cat needed to relieve pain or to assure a degree of comfort. No one denies, of course, the right of the ill, at any age, to decide that added survival may carry too large a burden of pain and disablement to be worm accepting. But, should anyone else have the right to make that decision?

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10 AVEDIS DONABEDIAN We are told that rationing of heals care is now taking place, as it always has. If so, we need to know who does the rationing, on what grounds, and with what consequences. And if still more rationing is to be expected, the same questions win need to be answered. Do we wish to strip the patient of insurance coverage so that economic necessity be- comes me rationer, while we stand at a distance, seemingly innocent? Shall we, openly or by insinuation, suggest to the aged that they have a duty to expect and ask for less? Should we make health care practitioners more direct accomplices in the deed, by placing upon them a duty to put me public interest above that of their individual patients? Or do we intend, rather, by differential reimbursement to providers, to subvert their judgments so Hat they conform more readily to our implicit social pur- poses? And who, in ad these questions, are Me "we" who both ask and answer the questions? In what arena? By what right? These and similar questions, lead us to the most fundamental issue we must face: the nature of the social commitment to health care in general, and to the care of the aged in particular. Respecting the aged we have proceeded waveringly, every fit of progress seemingly followed, first, by hesitation, and then by an insidious retreat. It is against this background of uncertainty Mat we must, alas, consider those features of system design that are needed to accommodate the peculiar requirements of the aged. SOME ASPECTS OF SYSTEM DESIGN The secret of success in planning health care for the aged is to take a comprehensive view of their total situation, so that its marry complexi- ties can be accommodated by corresponding features of system design. Accordingly, we cannot consider heath care independently of the social services required to support the aged when Heir individual capabilities begin to decline. And the system of health care, itself, must consist of many finely articulated parts, each serving a distinct function, yet each closely related to every other part. Only In this way can we achieve the many objectives that we pursue. Among these are preservation of func- tion, maintenance of autonomy, effective therapy at reasonable cost, and resort to institutional care only when all else fails. As ~ have already said, access to care is the first consideration. It is particularly so for the aged, since many of their disabilities are perhaps easier to prevent by anticipatory care than to remedy once Hey have become established.

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CARE AlID HEALTH NEEDS OF THE F7 J)ERLY PATIENT 11 Access depends, most fundamentally, upon a method of financing Mat makes care affordable. Because He financial resources of the aged, even- when relatively ample, are usually nonreplenishable, as little health care as possible should be financed from current resources, and as much as possible from funds put aside for the purpose in advance of retirement. Regrettably, at least in this regard, recent history has been a record of unremitting retreat. But lack of financial means, although critical, is not the only barrier to access. To get tome sites of care Be aged must overcome the barriers of physical and psychological remoteness while hampered by their own relative immobility and isolation, and also by the unavailability of suitable Formation. Even when Hey can reach the sites of care, He physical design of the environment may impose furler discomforts on the disabled and infirm. We must, of course, create the means by which the aged can be brought to health care. At the same time, the outposts of the health care system can be placed closer to where the aged live, making these sites both handy and familiar. Home care, itself, can be regarded as one means by which services are brought to patients in a sewing that offers much in patient autonomy, social integrity, familiarity, safety, efficacy, and low cost. Through the availability of home care we reduce our dependence on the hospital; we lessen exposure to its depersonalizing effects, to the pernicious conse- quences of the immobility it may impose, and, above all, to the costs and injuries of that frenetic playing out of the "technological imperative" for which the hospital is the natural stage. Through home care we also avoid, or at least postpone, the horrors that, too often, attend consignment to certain institutions. For these reasons, and many others, we applaud and endorse home care as an advance of signal importance. Nevertheless, with respect to home care, as with aB else in the health care system, we must maintain the wholesome skepticism that leads to furler research, on the one hand, and to fiercer improvement, on the other. Even after so many years of experience, there are some doubts as to whether home care for the chronically id and disabled reduces costs, raises them, or leaves them largely unchanged. It is clear, however, that the costs of home care, whatever their magnitude, are in danger of being shifted, more of the burden fading directly on patients or on members of their families. To this are added the many other responsibilities attendant to the patient's remaining at home. We must find a remedy for aU this. There is also a degree of uncertainty about the effectiveness of home care in improving the heath of the chronically in, or, if small

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12 AVEDIS DONABEDIAN improvements do occur, about Me justifiability of the high cost of achiev- ing such improvements. Pardy, these uncertainties may reflect the "over- medicalization" to which home care is not immune. Possibly, although this may sound even more heretical than what ~ have said so far, the quality of home care needs to be more carefully assessed and monitored. doubt Mat nursing care is immune to Me failings to which ad professional performance is heir, and it is even possible mat too much of it, besides being costly, may debilitate persona] and familial responsibility, leading to an overreliance on the kindness of strangers. Even the privacy of me home, one of its crowning attractions, may also do harm by obscuring We visibility of professional performance, while isolation and infirmity ex- pose the homebound patient to neglect, manipulation, intimidation, or abuse, usually at the hands of nonprofessional personnel who perform housekeeping functions. In the professional domain, a major weakness has been our inabil- ity, so far, to determine the appropriate balance of nursing initiative and physician responsibility in canny for the homebound patient, and to make that necessary partnership of equals a working reality. The attenuation, even the disruption, of physician responsibility is itself part of He larger problem of assuring a seamless continuity in care as the patient moves from hospital to home, to nursing home, to physician's office' round and round, in a sorry peregrination to an ultimate departure. Of aU the necessary objectives of system design in caring for the aged, coordination and continuity are the most fundamental and, seemingly, me most diffi- cult to attain. Greater coordination and continuity can be achieved to some de- gree by making more effective use of devices already at our command. Discharge planning for the hospitalized patient can become more preva- lent, more judicious, and more thorough. The communications that ac- company patients as they are transferred from site to site can be more timely, more discerning, and more complete. But, ultimately, we need to assure, by some means, a direct responsibility for the care of Be aged, in weEness and illness, irrespective of Be site of care. So far, that pluralism in our health care system in which we take so much pride has obstructed progress on this paw. There are, nevertheless, promising developments. It is no longer so farfetched to conceive of an integrated system of health care facilities that includes at least a health maintenance orgaruza- tion, a hospital, a home care program, a nursing home, and a hospice. In a context such as this, assuming that a parallel system for financing care

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CARE AND HEALTH NF:F'r)S OF TlIE ELDERLY PATIENT 13 were present, me patient, aged or otherwise, could move from site to site assured of appropriate placement in each and continuity of care ~ugh- out. A unit record, on paper or in Me computer, and a flow of other information of similar kind could serve as the vehicles of continuity. No doubt, patients and members of their families, if properly instructed, could also play a more active role in bringing about a higher degree of coordination and continuity. But perhaps We most effective vehicle would be a health care practitioner who would give care or at least oversee it at aU sites. ~ win betray a personal bias and an inalienable attachment to my own professional roots by saying that ~ hope that practitioner to be the patient's personal physician; but some other health care practitioner could assume that role, or perhaps no more than a patient advocate versed in the intricacies of the system, able to pull the right ropes. A concomitant of this design would be an ability to assess and monitor the quality of care not In artificially disjointed slices, as is now the case, but for functionary related wholes. In doing so, it may also be possible to accomplish something so many have so devoutly hoped for: to rely more heavily on the outcomes of heath care Tan it has been possible to do when no one could ten who was to be held responsible for what. CONCLUSIONS In these ways and others, we ought to offer the aged, in their declining years, release from needless pain, impairment, neglect, and humiliation. For the prospect of a liberated but protected old age is a gift not only to the aged. Sometime, sooner or later, we shad an be as they are. Their present is our own future. In serving them we serve no over than ourselves.