The primacy of caring

...In that respect, the first and second phases of the medical revolution can be significantly distinguished from the third, current phase...

...For those with lesser conditions, burdened by anxiety, or with distortions of affect, or with mild retardation or dementia, they need the care of others to function in the world, to have it made a safe place for them...

...My argument is that, once society has provided the baseline of preventive care and public health I have so far sketched, it has done most of what ought morally to be required of it...

...They are directed to generic health hazards to which we are all comparatively subject, not to those less common, more idiosyncratic conditions not well or fully addressed by general public health measures or social and environmental responses...

...It is also the one commitment a health-care system can almost always make to everyone, the one need that it can reasonably meet...

...One of them is made up of the health problems that the advances of the first two phases do not fully respond to: accidents, genetically induced illnesses not wholly amenable to behavioral or societal eradication, mental illness, and other conditions that tend to lead to premature though not necessarily early deaths or to a high probability of a life of suffering and disability...

...Caring is just not the trait that is emphasized for physicians the way medical knowledge is...

...A society may move on beyond that point, but there is no compelling reason to think it must do so...

...It is the pursuit of success with them that most makes health care, as an economic and social category, encroach on other societal domains important to the overall life of communities and societies...

...The benefit is mutual: We all gain, as a society, from each other's good health...

...That is not only because we usually have different personal goals, but also because the nature of the deprivation is less instantly palpable to the eye and the imagination than, say, physical pain...

...It is no less striking that the second historical phase was achieved through (a) concern, not with individual welfare as such, but with the damage done to groups by infectious disease, especially epidemics...

...The individual need for caring is more limited, able to be reasonably well circumscribed in decent social programs and caring individuals...

...That can hardly work when the enterprise itself is so decisively oriented toward cure, toward aggressive action, toward mastery of the body...

...One of them is that health care directed toward the welfare of large groups at risk from common, pervasive, and relatively controllable health threats still remains the most effective and relatively inexpensive kind...

...That is a biased understanding...

...It is not...

...It is the kind of contribution, moreover, that is not addressed to the uniqueness and idiosyncrasies of individuals, but to their common features...

...Is there not something anachronistic, even archaic, about urging the priority of caring over curing...

...They are both essentially private experiences, even though we can often observe their effects...

...The second conclusion is that the system promotes the greatest societal benefit by that focus at the lowest possible cost per person...

...Copyright ©1990 by Daniel Callahan...

...Again, I need not fill in the details of these familial and institutional needs...

...Sickness alienates us from ourselves first of all, from the familiar, comfortable, healthy body or mind...

...For the functioning of the disabled, their families will need technical training and psychological counseling to understand how to do what they must do, and how to live with the enormous pressures that being a caretaker can entail...

...It would take care of our most important requirements for the exercise of our citizenship and participation in the life of our society...

...For the dying, the need may be for that of an institutional hospice, for a solid home-care program, for the kind of psychological and social counseling necessary to ease the passage from life to death-which may be true for the family as well as the dying person...

...When all else fails, as it eventually must in the lives of all of us, a society that gives a priority to caring in its response to individuals is worthy of praise...

...It conveys, for some, sentimentality and softness, a vague ambiance of feeling rather than a systematic effort to make an effective difference...

...In still milder cases, counseling of family members may be needed, and vocational help...

...Leon Eisenberg has observed about the care provided by physicians, "The comfort that treatment brings-what has been termed 'caring' as opposed to curing-is what accounts for the antiquity and the continuity of the physician's function in society" ("The Search for Care," Daedalus, Winter 1977...

...The possibilities of caring are, in that respect, far more self-contained than the possibilities of curing...

...That is the one assurance we must all have from our fellow citizens and human beings...

...It is to ease their pain where possible, and then to help them live with their frailty, whether of body, mind, or function...

...The important question is not only how we might justify this sense of solidarity, if we assume that justification is needed, but how we choose to articulate it and to encompass it within the social and political systems...

...It is more difficult to appreciate so directly the thwarting of other goods and goals that sickness brings to another person-a trip thwarted, a job deferred, for instance...

...The ability to care requires a capacity to acknowledge our own mortality and our common vulnerability, as well as to understand the privacy and hiddenness of much pain and suffering in others, an understanding that requires imagination...

...This is something we can empathize with, sharing as we all do some occasions of pain...

...and (b) basic biological knowledge, pertinent to human beings in their common features rather than in their particularity...

...Of course some degree of pain and suffering can be tolerated, and I do not mean to imply that the relief of all pain and suffering would be an appropriate goal for the system...

...There can be pain without suffering, and suffering without pain...

...It sets us at odds with ourselves, and that alienation can quickly spread to a sense of alienation from others, those who remain among the healthy and the active...

...It is striking, moreover, that the progress of the historical first phase-nutrition and sanitation, most decisive for longevity-is far more a reflection of social and living conditions than of medical conditions...

...Something similar is true for the handicapped and physically disabled, thwarted in their need to function...

...They will depend upon others to act for them, to move them from place to place if they are in a wheelchair, to read to them if they are blind, to change their underclothes if they cannot do so for themselves, and, most of all, to accept them as still valuable, still cherished members of society...

...Care for them can seem useless, yet because there is no clear certainty about what it means to the victim of a severe pathology of mind or emotions, their care becomes important as a way of binding them to the community, a way of treating them with dignity, of recognizing the humanity remaining, however hidden or distorted...

...We need the help of others, and the provision of health care can be understood as an expression of a need for solidarity in our common plight...

...it is just not as likely...

...Where the limitation of curative medicine in the name of the good of the society as a whole-which I believe necessary-courts the danger of an unfeeling utilitarianism, a simultaneous and counterbalancing focus upon individual caring can keep a concern for the individual at the center of the healthcare system...

...Our victories over sickness and death are always temporary, but our need for support, for caring, in the face of them is always permanent...

...We might look at caring more closely by attending to the three basic human needs: the need to exist, the need to think and feel, and the need to function (to act in the world...

...most are and only a small proportion are not, at least in my experience...

...We feel we will lose the love and respect of others, that if our illness goes on long enough, or is severe enough, it will place us outside the circle of those for whom the world is still comfortably theirs...

...It is those latter two categories that pose the greatest economic problems, that make most problematic the idea of ultimately conclusive medical progress, and that most bear on uniquely individual well-being...

...I need not elaborate upon the kind of caring that those with different needs will require...

...But to make that case and to argue for the primacy of caring, I must now move from the bottom up, coming back to the individual...

...In most people, that threat evokes fear and dread...

...Demand could exceed possibility there as well...

...That is the real, and economically crucial, question...

...It is surely not because the subject has never been mentioned in discussions of curriculum reform...

...It need not and should not have those connotations...

...That in itself is symptomatic of the bias toward acute-care, high-technology medicine, with its comfortable presumption that it does something for people in contrast to merely holding their hands...

...If the center of caring is the way we respond to another as an individual person, a way of being with that person in all of his or her uniqueness, then its effective manifestation requires institutions, accommodating social structures, and a society prepared to make room for those it cannot cure or return to "productive" life...

...The term "caring" has its liabilities...

...The primary assurance we all require is that we will be cared for in our sickness regardless of the likelihood of cure...

...Of course it is important for the health-care system as a whole to know how it can prevent disease, and to know what it might do to cure it once individuals are afflicted...

...The health hazards that have been so effectively dealt with by such means all spring, as a rough generalization, from external, exogenous threats and conditions-for example, environment, diet, life-style, hostile bacteria, and viruses...

...The technical skills they deploy are impersonal, directed to organ and system failures, not to the particularities of individual suffering...

...The pain and suffering of individuals should, for all these reasons, always receive a high priority in the health-care system...

...We turn to them, they turn to us...

...With one critical exception-that of providing care (not cure) for each individual in all of his or her individuality-it may consider other health services morally optional and set them aside, if necessary, in the name of other legitimate social goods...

...I am also not claiming that it would be possible to do everything that might be imagined in the name of caring...

...While it is true that we will not know in advance those to which we might personally be predisposed or vulnerable, they are not a general threat to all individuals, but threats much conditioned by genetic and other individually unique features...

...As the ultimate form of separation from the human community, those undergoing the passage most need the company and care of others, to keep them socially in the community until the last possible moment, to assure them that they will not be forgotten, that the death of their body will not be preceded by the death of their social self, pushed out of sight and out of mind by fearful medical workers or families...

...If they are chronically ill, they may suffer some combination of all these needs...

...The success of those first two phases and our difficulty with the third suggest some important lessons, of direct bearing on the case for societal priorities...

...We respond most immediately and directly to that kind of pain and suffering, and it may be the most common and universal impulse behind the drive to help those who are ill...

...But this, the "third phase," has been accompanied by an increase in chronic disease and illness, particularly accompanying longer life expectancies: Cancer, heart disease, stroke, and the various dementias are the obvious examples of that...

...They fall into two categories...

...It is a mistake to assume that the kinds of successes characteristic of earlier medical history will necessarily be repeated in the future...

...The first is that the greatest benefit the health-care system can bestow is to focus its efforts on those approaches that historically constituted what I have called the first two phases...

...This article is excerpted from the book What Kind of Life by Daniel Callahan...

...What is it about the sickness of our fellow human beings that most draws our sympathy and desire to be of help...

...I am not claiming that it is inexpensive...

...But above all it must be prepared to support and minister to people in their vulnerability to sickness and death, which can only be reduced, never vanquished...

...They require the assurance that they will not be cut off from the company of those able to move about and act in the world...

...If it only did that, and nothing more, it would be an adequate health-care system for any nation...

...We will simply be anonymous, replaceable parts...

...The great value of the hospice movement is its contribution to the care of the dying and to opening up, once again, the possibility of accepting illness and death in an affirmative way...

...Combined with an aging population, this last cluster of conditions does not promise to give way to rapid solutions...

...The greatest failure of contemporary health care is that it has tended to overlook this point, has become distracted from it by the glamour of cure and the war against illness and death...

...That is also why their absence is inexcusable...

...To be sick is to be vulnerable...

...Care will only become central if, and when, medicine shifts its goals and ends...

...for reassurance in the face of death, for help with the emotional stress of a drawn-out, unending illness, for assistance with the physical tasks, the movement, that may gradually come to be beyond them...

...I will call that the "first phase...

...Too often it is nurses who are expected to provide caring, however...

...What can we conclude...

...Thereafter, as we have come to know, other improvements-surgical techniques, intensive care units, improved rehabilitation, organ transplants-have made some contribution...

...As Dr...

...This is rarely so possible with pain and suffering, whose insistence can be powerful, direct, and destructive of any possibilities of secular redemption...

...If we can understand that, we have a basis for both the solidarity and for its embodiment in a health-care system...

...DANIEL CALLAHAN, a former editor of Commonweal, is the director of the Hastings Center...

...To do this effectively requires skill and insight...

...It is what is conducive to the devising of a rewarding and supportive society, showing us that our existence as identifiable persons, regardless of our economic or societal worth to the collective whole, has a central place...

...Preventive medicine has the same feature: It is directed in general to that which promotes health for everyone, not for those at risk from some specific ailment...

...A decent, if not perfect, job could be done...

...it is then taken to be what we give people if we cannot cure their disease or change their condition, a kind of consolation prize...

...Do we, in some sense, owe it to our neighbor to see that he or she has access to health care, or should we see it only as an act of charity or benevolence, not strictly required but expressive of our moral feelings...

...Exactly the opposite is true in the quest to meet individual curative need...

...A health-care system that provided nothing other than sanitation, good food, a decently clean environment, childhood immunization, antibiotics, and trauma care would already have done enough to assure that the majority of its citizens could carry out their societal roles...

...The threat of death is the most obvious, and extreme, instance of danger to our need to exist...

...To care for someone is to give him or her our time, attention, sympathy, and whatever social help we can muster to make the situation bearable and, if not bearable, at least one that never leads to abandonment, the greatest of all medical evils...

...The techniques of the second phase-childhood immunization, on the one hand, and the use of antibiotics to cope with infections, on the other-turn out to have the same characteristics...

...It is in caring that we can respect the claims and calls of individuality, that we can most show our solidarity with each other...

...It will not be possible for us to meet such need, no matter how hard we try or how far research advances, or to pay the costs of such a crusade, one ever doomed to fail on one ragged edge or another...

...At the center of caring should be a commitment never to avert its eyes from, or wash its hands of, someone who is in pain or is suffering, who is disabled or incompetent, who is retarded or demented...

...The other is the way we socially structure our response: by organizing institutional support when needed, a support oriented toward the provision of comfort and security, assisting the patient to accommodate to his or her situation in some structured way...

...Yet to make that kind of hope the foundation of policy and spending-to act and spend as if it must happen-is exceedingly unwise...

...They affect all individuals in relatively similar ways and pose comparable hazards to all individuals...

...Anything beyond that level would be welcome, but not necessarily required...

...A healthy environment, including the provision of sanitation and a good diet, makes the most important contribution to the good health of individuals...

...Since they are also predominantly conditions associated with aging, they will in any case almost certainly give way to replacement illnesses, that is, to other diseases, possibly chronic also, that will in turn become the successor marks of old age...

...To get at that question, let me see if I can bring to the surface the basic impulse that seems to lie behind our concern for each other in our sickness and disability, and then go beyond that to the provision of health care through the government...

...That claim establishes the moral foundation for a system of universal health care, while at the same time limiting our claim for individual cure...

...We may not know what it is like to suffer a heart attack if we have not had one, but we can understand what it is to feel pain, to experience a desperate shortage of breath, to suffer anxiety and fear...

...What are the possible policy implications of that historical trend...

...Programs of occupational therapy will be required, as well as a range of community services, most ofthem going well beyond the narrowly medical...

...When the individual need for cure is infinite in its possibilities, the need for caring is much more finite-there is always something we can do for each other...

...Even if, under the most optimistic possibility, there is an eventual "compression of morbidity" (a shorter period of illness prior to death in old age), there could still be frantic efforts at that diminishing ragged edge to extend life and defeat death...

...In either case, only I can experience it, and only I can be relieved of it...

...Illness is hostile to the integrity of the self, its sense of being at one with and in direction of itself...

...In a general way, however there is an almost universal sentiment in developed countries that there is some kind of mutual obligation to provide care...

...Consider also our need to think and to feel...

...The next most important set of gains, from the late nineteenth through the mid-twentieth centuries, came about with the virtual conquest of infectious disease by means of vaccinations and antibiotics...

...That so many of the most difficult conditions are associated with aging means also that, given human nature itself, the ragged edge of aging will most likely always and necessarily generate new debilitating and lethal conditions to replace those earlier reduced or eradicated...

...The medical educational system has fitfully tried, by rhetoric and exhortation, to bring caring back to the center of medicine...

...The other category is made up of the "third-phase" chronic illnesses and disabilities, especially those that increase in incidence with age, becoming especially pronounced in old age...

...However intricate and elaborately structured such institutions may be, the provision of caring of that kind is within the range of finite possibility...

...The steady increase in chronic illness, the almost certain emergence of economic limits on many curative possibilities, and dissatisfaction with impersonal medicine press it once again to the foreground...

...That is possible...

...Its presence can be a steady and faithful one even in the inevitable absence of resources to carry forward the open-ended enterprise of cure...

...The reality of aging makes it certain, in fact, that it must sooner or later fail in some fundamental ways...

...Eventually they will, and must, triumph...

...It has been a perennial topic, but it always loses out to an emphasis on scientific knowledge and technical skills, and there is no end in sight to that bias...

...The caring response can take two related forms...

...Does that not undo the very point of scientific medicine, that of finding cures for illness rather than settling for care...

...Perhaps simple and ultimately inexpensive treatments (or prevention regimens) will someday be found for those diseases and conditions that most characteristically pick on individuals in their individuality...

...Caring can best be understood as a positive emotional and supportive response to the condition and situation of another person, a response whose purpose is to affirm our commitment to their well-being, our willingness to identify with them in their pain and suffering, and our desire to do what we can to relieve their situation...

...A society cannot be said to owe its citizens the pursuit of every medical possibility to meet every curative need, much less when the possibilities of doing so are endless...

...It would not...

...That means focusing on the population as a whole, not beginning with the special needs of individuals...

...The individual variations are numerous and complicated...

...One of them is constituted by the attitudes and personal traits we bring to bear-our concern, sensitivity, dedication, and steadfast patience, for example...

...What priority should we give these additional categories...

...The great historical improvements in life expectancy, from the seventeenth through the early twentieth centuries, first came about as a result of better nutrition, sanitation, and general living conditions...

...Yet that is likely to seem too stringent a standard, not only because a country might be able to afford more, but also because it would leave as a residue some significant problems for particular groups within the population...

...This is not to deny that something similar may one day turn out to be true of many chronic diseases of the third phase...

...It benefits in principle everyone more or less equally, in much the same way as do fire and police protection and national defense...

...It is in caring that we can address the uniqueness of persons, that which makes them different from each other...

...When we look at health care from the perspective I have sketched here, a number of conclusions can be drawn...

...And it admits of limits, for we already can, at a reasonable and circumscribed cost, provide that level of health care without inherently limitless expenditures-particularly if we accept the fact that, while it will not achieve good health for all, it will achieve good health for a sufficient number to carry out the main functions of society...

...What is its basis...

...I am only saying that they are forms of individual need-private, hidden, not directly sharable with others-that most merit our attention and that are most open to our help...

...Yet if we cannot guarantee the individual unlimited medical cure of disease, the meeting of all individual curative needs, then what alternative is there to find that central place for the individual...

...We are all fellow patients or potential patients, doctors and laypeople alike...

...Not at all...

...That makes them amenable neither to simple vaccinations for prevention nor to simple treatments, such as antibiotics, once contracted (though genetic therapy could make a difference here...

...Our success in keeping people alive through their childhood and into their adult years means an increased risk for the chronic illnesses of later life...

...It will be a fearful and threatening one if it does not...

...That bias pushes, and must push, care to the side...

...Writ large, our mutual and shared response to the suffering of others is what makes the difference between a merely well-functioning society and a decent and humane one...

...It is undoubtedly our shared sense that we cannot, alone or on our own, cope with the ravages of illness and death, even though they are our most private of experiences...

...Even though many seem, in their dying, to be able to accept it, the passage from life to death must stand as the center of the drama of human fate...

...A good society ought to respond to that individuality...

...that is the most fundamental demand made upon us...

...As Larry R. Churchill has nicely put it, "To the extent that we isolate ourselves and count anyone's suffering as insignificant, to that extent is our own humanity diminished" (Rationing Health Care in America, University of Notre Dame Press, 1987...

...There is also no certain likelihood, much less guarantee, of success...

...Our claim is simply this and no more: We cannot endure together as a people without a sufficient level of health care for the community as a whole...

...We can reasonably demand, for our common benefit, that there be a health-care system which provides enough general health to ensure the decent functioning of the society and its main institutions...

...What kind of claim can we, by contrast, make as individuals in all of our individuality...

...To care for another is to minister to these fears, to supply love and patient fidelity to the anxiety about separation from others...

...It has the supreme advantage that it provides a very general benefit, one in itself sufficient to meet the most important societal need for health...

...But we can, as individuals, make a solid claim for a health-care system that provides for the general health of society, of which we are a part...

...THE PRIMACY OF CARING CHOOSING HEALTH-CARE PRIORITIES DANIEL CALLAHAN In thinking about health priorities, we would do well to remind ourselves of a point long made, well supported, and yet routinely neglected: The most important health gains up until very recently were those that came from aiming at the health of groups, not that of individuals...

...That claim is one we make in the name of the welfare of the society as a whole...

...It is to assure another that they remain important to others, that their illness has not deprived them of a life in the community...

...I call that response one of "caring...

...Suffering, by contrast, is a broader, more complex idea...

...In the case of other goods thwarted by illness, moreover, it is possible in many cases for alternatives to be found (even if a lesser choice), or for the deprivation to be adapted to and tolerated...

...Pain may be defined as a distressing, hurtful sensation in the body...

...The third conclusion is that it is much easier to morally justify, and even demand, a strong societal role in providing that kind of basic care...

...I believe that it is, above all, the pain and suffering that most disturb us...

...that should never be forgotten...

...It is that passage, more than the inconceivable situation of actually being dead, that most grips the imagination, most presses us back upon and into ourselves...

...Many of them, most importantly, correlate heavily though not exclusively with aging...

...I have tried to show the kind of claim we have as citizens on the health resources of society...

...Medical education remains overwhelmingly technical in its emphasis, and of course those skills are the most highly rewarded financially...

...One reason for their persistence is that they are multifactorial in their causality, take many different forms in their expression, and more reflect some fundamental limitation of human biology...

...That was, in fact, the primary rationale behind the universal health-care systems of most of the European countries, not that of an individual right to health care...

...Caring is the foundation stone of respect for human dignity and worth upon which everything else should be built...

...It is the vulnerability that illness creates that most requires the response of others...

...Caring might also suggest acting by default...

...Reprinted by permission of Simon & Schuster, Inc...

...Caring should always take priority over curing for the most obvious of reasons: There is never any certainty that our illnesses can be cured or our death averted...

...The more the system attends to individual needs not met by basic public-health measures and primary health care, the more it guarantees an ever-larger agenda and ever-higher costs, and especially as the curative research agenda gravitates, as it has, to conditions affecting the individual lives of the elderly...

...If it only did that, and did it well, it would be a reasonably (if not fully) just system, providing a basic benefit for everyone...

...At the center of these needs is the experience of illness, disability, and loss of self-control and self-creation that ordinarily accompanies them...

...The difficulties that we face, by contrast, with the chronic illnesses that now dominate health care-schizophrenia, Alzheimer's, cancer, heart disease, stroke, multi-organ failure-are in many important respects different...

...It is for the most part well known and those who work with the afflicted can readily supply the details...

...For the mentally ill, or retarded, or the elderly demented person, institutional care will be necessary in the most severe cases, and good programs of home care for those not quite so badly off...

...The answer to that question is unclear, for much will depend upon just what is being asked of us...

...I am only claiming that caring does not have about it the inherent infinity of possibilities characteristic of that medicine which aims to cure illness and to forestall death...

...To constantly invoke the success of the past to justify research on the remaining health agenda is not only costly, but increasingly so...

...In any event, death always wins...

...This can be called the "second phase...

...With this phase was born the idea of public health and preventive medicine...

...The continuing failure of medical education to train students to do this well is revealing...

...In the most extreme cases, those suffering from severe mental illness, dementia, or retardation can seem well beyond caring, so cut off from others that they appear irrevocably trapped within themselves...

...It may be defined, in the case of illness, as a sense of anguish, vulnerability, loss of control, and threat to the integrity of the self...

...If our health-care system (and the social system of which it is a part) did nothing more than keep the conditions of the first two phases in good working order, it would ensure long and healthy lives for the majority of the population...

...This is hardly to say that doctors are uncaring...

...If we are sick enough, we usually look to others for help...

...The family may on occasion require legal assistance, and sometimes the help of social workers in trying to hold itself together in the face of the death of one of its members...

...It is the suffering of illness, not simply the pain it may bring, that most oppresses: our fears about the future, our feeling of loss, our anxiety that control and self-direction are, or may be, no more...