Ethics Committees and Social Issues: Potentials and Pitfalls DANIEL CALLAHAN

When the Karen Ann Quinlan case emerged in the mid-1970s and the New Jersey Supreme Court made mention of the role that ethics committees might play in such cases, no one could have predicted at that time what the consequences of that observation might be. It took a while for momentum to build, but we are now seeing the flowering of what is an important movement in the field of bioethics: the interplay of ethics committees and broader societal issues. The role of ethics committees in their home institution has been well defined over the past decade. What needs to be explored now is the wider range of issues that really begin outside of the hospital but whose impact is felt internally. There are some issues that inherently arise within the hospital setting, such as when a committee consultation is required for a difficult decision about patient care. Other problems, however, are much less under the hospital's control. Nevertheless, hospitals have to live with these problems, and the decision-making process taking place within the hospital will have to take account of the fact that even though the problem originates elsewhere, there are undeniable internal consequences. Some of the more urgent societal issues now bringing pressure to bear on hospitals are AIDS, allocation of resources, and exploding technological frontiers. In the spirit of Nostradamus, I will offer a few predictions about what might happen over the next few years in the hospital setting that will reflect the broad changes now taking place in the American healthcare system, pushed mainly by external pressures. The signs and symptoms of these changes are already apparent, and what will happen is likely to be an intensification of pressures already present. Increasing bureaucracy. The most obvious trend is that there will be more and more external regulation and bureaucracy. It is certainly not likely that those administering or working in hospitals are going to find themselves freer in the years ahead to make decisions as they see fit. Rather, given the large number of changes taking place, coupled with the fact that in this country we appear to prefer solving many of our problems through bureaucratic systems, guidelines, and regulations, it seems inevitable that this is going to be an increasing part of hospital life. From an address given at the Annual Congress of Ethics Committees, San Francisco, California, April 1991. Cambridge Quarterly of Healthcare Ethics (1992), 1, 5-10. Printed in the USA.

Copyright © 1992 Cambridge University Press 0963-1801/92 $5.00 + .00

Daniel Callahan

Changes in the doctor-patient relationship. I would expect to see continuing changes in the doctor-patient relationship, not only because of the well-established trend towards more equal treatment of patients, but simply because of changes brought about by virtue of economic and regulatory forces. Patients themselves are going to come to physicians with an increasingly different set of expectations. Along with the expanding role and power of administrators, this will create a doctor-patient-administrator triad, requiring some new working relationships among all three parties. This will be played out against the background of practice guidelines, which are bound to make a difference. There are going to be more and more rules telling doctors not only how to practice medicine, but also what "good" and "bad" medicine is, and what the consequences of practicing either will be. Narrowing of patient choice. Patient choices are going to become more limited in the coming years. We are already seeing the outbreak of the debate regarding medical "futility." Some people argue that such debates arise as physicians attempt to regain some of the territory lost to increasing patient autonomy. The trend has been to empower patients to say "no" to treatment. But we are now moving into an era where the patient's power to say "yes" and ask for and receive treatment is going to be increasingly limited. Expanded role for families. We can expect to see a greater role for families in the years ahead, with a larger need as well for ethics committees as families and surrogates look for guidance. The patient will remain the central focus, but given the problems of incompetence and the likelihood that this will increase in patients as our population ages, the role of the family in decision making is going to be increasingly important. Ethics committees are likely to be more important in years ahead precisely because the number and extent of external pressures are going to increase. There will be an urgency and increased willingness to turn to some group for assistance in making decisions —and perhaps more delicately for assistance in legitimizing decisions, a point I will return to later. Ethics committees will already be in place as a logical resource for an expanded consultative and perhaps decision-making role. The overriding reality that will force a reassessment of the committee's role will be the economic pressure on the healthcare system. Economic constraints and boundaries are already visible, and I see no reason to think they are going to abate in the years ahead. We have not managed to contain costs to date, and it seems the desperation this causes is only going to increase in the future. This is not news to those who work in the healthcare system, but it is important to try to take the measure of these changes and ask how they are going to shape both the most intimate decision-making situations and the larger settings in which hospitals deliver care. Against this background, the possibilities for ethics committees making a contribution to larger social issues are great. There are enormous opportunities for expanding the role and scope of committees, but at the same time there are some pitfalls. Can ethics committees safely move beyond their traditional roles? Historically, these committees initially were developed to help medical staffs and families with individual decision-making problems. That, of course, is the legacy that came from the original impetus of the Quinlan case. As time went on, the focus began to broaden and committees were increasingly seen as places where policy matters pertinent to clinical ethics could appropriately be discussed, and ethics committees were also seen as appropriate forums for education within the hospi-

Ethics Committees and Social Issues

tal. The current question of involvement with economic and social issues represents a new potential role, one not envisioned in the early years. Consider, for example, a role for ethics committees in hospital resource allocation. The difficulties inherent in moving into this larger and more complex role turn on questions of competence and cooptation. Are ethics committees appropriately organized to deal with such issues? As committees move into allocation problems, they will inevitably become involved in some of the broader political debates within society and certainly those within the hospital. They may be forced to take sides in significant institutional debates, and they may well be looked to by administrators, trustees, and others not only as potential allies, but as potential legitimators of decisions these groups might like to see made. Herein lies the trap: how can ethics committees maintain a balanced, neutral role of being a resource to all and at the same time become embroiled in the kinds of issues where institutional factions may be profoundly divided? How can they avoid being coopted by one faction or another? The question of competency is also important here, mainly because ethics committees have typically been organized to deal with clinical, not economic issues. Their expertise is meant to be that which is sensitive to dealing with individual cases. But if they are now going to deal with allocation questions —such as "Should a particular hospital unit be eliminated or reduced?" or "Should outpatient services be expanded at the expense of traditional inpatient services?" —then the immediate question becomes "What kind of competence is required to deal with these issues?" One obvious kind of competency is the ability to read financial sheets. It is important to decide whether an ethics committee can or should be qualified to examine the books of a hospital and decide if administrative decisions are correct. Will there be members of the committee who will competently be able to determine that things are not nearly so bad as an administration claims or to question a proposal to cut services to the indigent when more lucrative services are duplicated elsewhere? Committees that are going to deal with such issues will need some new skills, gained both by education of existing members and by the augmentation of the committee with new expertise. My own bias is that great care is needed before accepting this expanded role. Ethics committees may be able to play a useful and helpful role here, but only if they are 1) truly competent or can make themselves competent and 2) able to resist becoming politically entangled or subverted and used in the service of one contending faction or the other. Simply becoming one more biased actor in an institutional struggle seems to me to be the fastest way to lose credibility altogether. Consider another kind of expanded role for ethics committees. As the number of people with HIV infection and AIDS increases, conflicts do also, such as whether physicians and other healthcare workers should be required to care for such patients. Staffing problems are also occurring, and pressure is building to force healthcare workers to reveal their own HIV status. While ethics committees contribute to these debates, the potential for some nasty debates is strong and growing. There are going to be some disagreeable struggles among the medical staff, administrators, and various patient communities both within and outside the hospital. In this critical situation, I see the most useful role for ethics committees to be one of medi-

Daniel Callahan

ation and conciliation. Additionally, there may be a role for committees in developing guidelines. But the most crucial role will be that of a neutral party that can lower the emotional temperature of the debate. It is hard to see who else could offer such a service. I would urge committees in hospitals where these problems are just beginning to start early on developing approaches to the problems. Regarding other hospital problems, there are obviously going to be great pressures on hospitals to hold down costs and to generate new business in the years ahead. Hospitals are increasingly using advertising techniques that might be more suited to Madison Avenue than medicine, and there are interesting debates going on about what ethical limits a hospital ought to observe. There are important distinctions between, for instance, stating simply that a service is available and the use of a hard sell utilizing scare tactics to lure people to the hospital. Ethics committees might be a logical body to assess the propriety of such marketing efforts. However, in general I would urge committees to be particularly cautious about getting caught up in large-scale institutional struggles over the allocation of hospital resources. But committees could fruitfully enter this complex terrain by fostering general discussion about general issues of allocation, standing apart somewhat from the details of local squabbles. Caution while navigating this territory is essential if the committee's function here is to be workable. Technological advance is another area of potential committee contribution. There is a renewed movement in this country in healthcare technology assessment, mainly as a hope for saving ourselves from economic destruction through monitoring and control of technological advances. We have yet to see how this assessment is going to play itself out in hospital settings, but some predictions are possible. First, we may as a nation finally decide to undertake a careful and complete assessment of existing technologies. This will be a massive project and a difficult one; it will require research and cooperation in many institutions. I think the drama will come in the second stage, when we start to get some results of that assessment. What will happen when we have relatively sound evidence that particular therapies and procedures are not efficacious and need to be culled —along with the people who provide them? Mere exhortation will probably not work. There is a traditional response that runs: "I don't care what the evidence is, I know this works and my patients know it works/' That is part of the endless conflict between medicine as art and medicine as science. That conflict will be heightened when regulators, payors, and administrators start to issue reimbursement policies based upon technology assessment. The unpleasantness will arise in direct proportion to how strict the standards are. As these struggles emerge, ethics committees will have a heightened potential for providing service to the entire institution — to mediate and to attempt to reconcile differences. Increasingly, I have come to think of ethics committees as having a major potential in a community education role. There are several reasons for this. There is a commanding need for public education. Our healthcare system is easily the most confusing and chaotic in the world. The public does not understand it, and those of us who are called experts often do not understand it either. People are asking how we can educate the public about our huge system.

Ethics Committees and Social Issues

Currently, when community education is attempted at all, it is done in a scattered manner. Something more systematic and organized is needed. Hospitals are the logical place to begin, because they are the best-known healthcare institutions in their communities. Ethics committees are strategically situated to put the needed pressure on hospitals to undertake this role. The task can be presented as both an altruistic fulfillment of mission and as a positive public relations function. Public education can make a difference in the areas already mentioned above. With respect to AIDS, we know the economic and medical pressures are going to increase, along with pressures for discrimination. It is discouraging to hear people question why we are spending healthcare resources on people "who misbehaved and did things that ruined their own health/' This concern must be addressed before it worsens. Community forums could be arranged to bring various leaders together with citizens to clear the air. The ethics committee role of conciliation could be powerfully fostered by doing some true civic education. The allocation issue is another example where more public education is sorely needed. The most glaring problem here is a schizoid public attitude. Opinion polls show that, on the one hand, everyone agrees we ought to spend a million dollars on anyone who needs it —but this should be done, on the other hand, without raising taxes or diminishing our choice of care! Americans want it both ways, without cost or inconvenience. If we are to work toward a real solution to our dilemmas, we will have to reduce those contradictions and get people to recognize the realities and the necessity for tradeoffs. I see no way to accomplish this other than relentless efforts to confront the public with the facts, forcing them to make choices. The emerging issue about medical "futility" and limits to patient demands is a wonderful one to bring before the public for this purpose. We are all aware about the need to educate patients about their rights to say "no" to unwanted treatment. There is a newly emerging need to educate people to the fact that doctors will have to say "no" to patients who want futile or excessively expensive treatment. This is an area where enormous public education is going to be necessary. With respect to technological advances, it is going to be important to better explain to the public the uncertainties and ambiguities of medical technology. There is a tendency on the part of the American public to overvalue the efficacy of medical care. People assume all too often that there are miracle cures and that it is only a matter of gaining access to them. We are, in addition, going to see more cost-benefit analysis of healthcare in the years ahead, and this is a notion with which Americans seem to be particularly uncomfortable. The idea that cost could be a consideration in healthcare is not congenial with the common view that ethics and economics are separate domains. Even though that view is unworkable, even naive, it is popular and widespread. Once again, this is not an easy area to understand, but the task of education is vital. All of these issues point to a huge unmet need for organized public discussion. I urge ethics committees to take the lead in that effort. This would help tremendously in providing the host hospital with an educated patient population, as well as fostering an educated^ citizenry. In fact, the new Patient Self-Deterrnination Act requires that this occur to some extent. That Act provides a wonderful opportunity for educating potential patients about termination of treatment and advance directives — before they show up in the intensive care

Daniel Callahan

unit. Beyond that, there is an abundance of issues that would benefit from public dialogue at community forums, civic club meetings, high schools, and so on. If hospitals can say to the public, "Look, before you show up here, we have things we want you to know about what goes on in this hospital and in the healthcare system and how things are changing," that would be a wonderful contribution. I find it amazing that every hospital has a public relations staff that worries about the institution's image, but few do much in the way of general education. Hospital PR cannot be considered educational in any serious sense of the word; the concern there is imagebuilding. My belief is that it is time to move beyond that. I hope that as ethics committees move along another step, they will see this new dimension and opportunity. After all, who else would be better suited for the job?

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Ethics committees and social issues: potentials and pitfalls.

Ethics Committees and Social Issues: Potentials and Pitfalls DANIEL CALLAHAN When the Karen Ann Quinlan case emerged in the mid-1970s and the New Jer...
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