Nurses live and work in a world that has become - and will remain - unequivocally pluralistic in nature and outlook. To put this another way, nurses now live and work in a world in which there is no one single reality, but many coexisting realities (multiple realities) among which they must choose. The development of a pluralistic world view has had a significant impact on our moral ways of seeing, believing and acting. The more pluralistic our world has become, the more value systems there have been available to us and the more complex our ideas about what constitutes the moral life and how best to achieve it. Little wonder then, that in the 1990s, the world in which we live, and the contexts in which we work, have all become increasingly characterized by moral indiscernability, ambiguity, uncertainty, controversy and perplexity. (Light) For some, these difficulties have been compounded by what they refer to as the 'postmodern predicament' wherein, it is assumed, 'we no longer share any common grounds to which we might appeal for the adjudication of our differences'. (Light) To add to this predicament, we continue to face moral problems in our day-to-day personal and professional lives, we continue to worry about whether the moral choices we make are 'correct', and continue to suffer the moral perplexity and distress that inevitably follows from 'not getting it right' or from being unable, for various reasons, to translate our moral reflections and judgments into action. Against this backdrop, at least two important questions can be raised: what are the implications of this scenario for the nursing profession? And how can nurses be prepared best to deal with them? In this paper I will try to discuss and analyze the American Society for Bioethics and Humanities (ASBH) - the non profit organization which makes abounded contributions to our society.
Reflecting a mood that seems to be seeping through bioethics, several speakers at last years conference of the American Society for Bioethics and Humanities issued urgent calls for renewed attention to issues of justice. Many now seem to feel that bioethics has been too much concerned with medical ethics, with the way individuals render treatment to or perform research on other individuals. More important but less discussed are the societal and international questions about justice and health care.
Perhaps one good reason these large questions have drawn less attention, of course, is that they seem less susceptible to resolution. But perhaps there are other ways of approaching them, ways that will pare them down to more manageable mouthfuls.
ASBH tries to craft substantive guidance for the just allocation of health care resources within managed care organizations by drawing out the implications of some ground-level moral assumptions embraced by managed care. If the primary goal of a managed care plan should be improving the health of its participants, for example, then there is a presumption, albeit a rebuttable one, against running plans as for -profit enterprises, since such plans appear to divert resources from improving participants' health toward increasing owners' wealth. If patients and participants should have the opportunity to consent to the allocation of health care resources in their plan, then there ought to be mechanisms - participant forums or boards - by which that consent can be made meaningful. In effect, ASBH sidesteps the frustrating effort to specify justice itself by showing that at least in the context of managed care some of the issues of justice can be covered by other, arguably more easily specified less controversial values.
Also, ASBH wants to sidestep the general questions about justice. ASBH's target is not managed care plans but the voluntary, largely employment-based scheme our society has evolved for purchasing insurance. Voluntary, employment-based purchasing is afflicted by a variety of internal imbalances, ASBH argues: inequities in the way health insurance is paid for, because poor employees subsidize wealthy employees while big firms subsidize small firms; a conflict of interest in the selection of health insurance, since the purchasers are entrusted both with employees' health and with finding cheap plans; the concentration of the healthy and the sick into separate plans, undermining the very construct on which insurance rests; and the free-ridership of the uninsured, whose emergency care must still be provided and paid for.
Bioethics consultation is flourishing in the private sector. The corporate clients are aware that their work raises substantive ethical issues, and often they are concerned about how their response to these issues may affect their public image and their financial standing. Many are prepared to compensate ethics consultants at substantial rates.
This is a new phenomenon for the field of bioethics. Traditionally, most requests for comment and analysis arose within the academic setting, where compensation for consultation is generally modest, if it is offered at all. But consultations are not new. Bioethicists have provided clinical consultations on individual cases and on policy development within academic medical centers, health care delivery systems, and community health care institutions. (1) ASBH has consulted about the design and conducts of clinical trials for public and private funding agencies and has participated on institutional data and safety monitoring boards for those trials. (2) ASBH have also participated as consultants for governmental, quasi-public, and private-foundation working groups developing guidelines for the ethical practice of medicine, biomedical research, and health policy. (3)
What distinguish this newest form of bioethics consultation are several features:
the consultation is sought by a for -profit client, not by an academic institution (although this distinction loses force as patents, profits, and biotechnology come increasingly to characterize the academy);
the issues have potential financial implications for the clients;
the consultant is offered a substantial fee and perks for the consultation; and
the consultant is not a full-time employee of the client (full time consultancy relations raise still other issues, beyond the scope of this paper). (Letts, Ryan and Grossman) Educational sessions, public performances, and agent-negotiated after-dinner speaking engagements fall outside this list and are not reached by this text. But as academic institutions anti not- for -profit corporations begin acting more like for -profit firms, they will fall within the guidelines suggested below.
There are those who have thoughtfully and seriously challenged this new role of bioethicists. In part, these commentators are concerned about the appropriateness of ethicists who should have broader interests, such as concerns about social justice, serving clients whose primary interest is profit-maximizing. This concern is heightened when it is suspected that the consultation is not a genuine request for advice, but rather just an effort to justify what is planned anyway.
In part, too, the critics are concerned about the increased conflicts of interest created by the substantial fees available in the private sector. Finally, they are concerned about the effect that these new consultations may have on both the integrity of the field and its reputation for objectivity, independence, and impartiality. Some are worried about the effect that even the appearance of a conflict might have on the reputation of the field. While some might regard these concerns as inherent in the process of bioethics consultation, others see these problems as unique to this new type of consultation.
The effort of business to become more ethically conscious should be promoted, and since it is unlikely that corporations will have the internal resources to deal with these issues, consultation will be required. Moreover, much of the activity that raises the most complex bioethical issues is now conducted in the private sector (where the majority of research now takes place), and bioethics can have an impact on that activity only if bioethicists can be part of the dialogue.
ASBH consultation is as deserving of compensation as other types of expertise the client needs. Moreover, while pro bono consultation is often laudatory, affluent clients do not seem to be the appropriate recipients of pro bono service. Yet compensation poses real risks to the individual and to the field, and the critics are correct to point them out.
American Society for Bioethics and Humanities is on consultation in the private sector, some of these risks arise in the more traditional activities of bioethicists, raising the same need for strategies to manage them there. In some cases we recommend a specific way of managing the risk. In other cases we discuss a range of alternative approaches and identify the strengths and weaknesses of each.
Until the latter part of the twentieth century, there had been a longstanding agreement in medicine and the law that advertising was not compatible with either the appearance or the reality of professionalism. This agreement seemed particularly important in areas where there was no consensus on the credentialing and licensing of experts. In recent years, it has come to be seen that advertising serves two legitimate functions: enabling consumers to be aware of available services and encouraging differentiation between providers. (Morse)
False or misleading advertisements are still held to be unprofessional, of course. examples of these include unsubstantiated claims of expertise and experience, promises of outcomes that cannot be guaranteed, and claims to uniqueness. ASBH have already established fuller criteria for appropriate and inappropriate advertising. (Morse) ASBH believe that those criteria are helpful for evaluating advertising about bioethics consultations and that bioethics consultants should become familiar with the issues and established standards. examples of reasonable advertisements are newsletters and brochures that describe the consultant's resources and accomplishments.
Soliciting business, which is the targeted approach to individual potential clients, augments concerns about inappropriate advertising and presents the appearance of a "hired-gun" who is not acting in accordance with standards of integrity. Those engaging in soliciting business should therefore exercise diligent care to ensure that professional standards are met. They should also recognize that some in the field will find their behavior inherently objectionable.
The most important technique for minimizing the risks of this sort of consultation is negotiating appropriate terms for the consultation at the outset. When negotiating terms, among the issues it is important to address are the appropriateness of the client, individual versus group consultation, the consultative process, the standards to be used in formulating recommendations, how the results and outcomes will be presented, and the rate of compensation. What approach to these issues is best will necessarily vary depending upon such factors as whether the consultation concerns a single issue or is ongoing, the complexity of the issues, and the possible public impact of the consultative process.
I think the consultant has an obligation to find out enough about the client and its history and current projects--the products and services it is developing, for example--to feel comfortable about working with the client. Moreover, the consultant must be concerned about whether consulting on these projects generates a conflict of interest, since the consultant may already be working on the same set of issues for other corporate clients or for government agencies. Unless all of these other parties are informed and have agreed that the consultant may accept the new consultation, it should not be undertaken. Transparency about the full range of the individual's consultations avoids problems with the use of confidential or proprietary information and protects the consultant's ability to separately examine the issue in each individual setting.
The benefits of a group process may include a diversity of viewpoints anti disciplines and an intrinsic peer review process. On the other hand, an individual consultation may offer the benefits of clarity of result and speed of process. The respective advantages of these options will depend on the complexity of the issues, the time table dictated by circumstances, and the client's needs. If it is agreed that a group process is preferable, then each candidate for the group should have information about the other members' qualifications and affiliations when deciding whether to participate in the group. Regardless of which arrangement is suggested by the client, those approached should consider whether they are the appropriate experts to be included in that process. Possibly others are more skilled on the particular issues and should be recommended to the client.
The structure of the consultative process may vary considerably. Among the issues to be addressed in the agreement:
Who convenes and chairs the process?
Is the agenda already identified or will it be developed, and if so, by whom?
Will reports be approved by a simple majority, a super-majority, unanimity, or consensus (and will there be room for the presentation of minority and dissenting opinions)?
Under what conditions (including substantial modifications of the process without prior agreement) do the consultants or the client have a fight to terminate the process, and what are the implications of that termination?
How can the client be a useful participant in the discussions without risking the independence of the consultative process?
What documentation of the activities will be kept to protect the integrity of the process?
The client must provide accurate, complete, and timely information relevant to the issues raised by the consultation, and in ongoing consultations, to the development of client products and policies. The consultant or team must therefore have access to individuals who can provide this information as needed. The contract must specify that a failure to provide requested either information or access to requested individuals is grounds for the consultant to terminate the contract.
Issues of transparency and confidentiality are particularly difficult to balance. The client might choose to make the entire consultative process confidential as part of its strategic planning process, since even the fact that a company feels it may be confronting an ethical dilemma may reveal a portion of its strategic plan. The ethicists might prefer to keep the process confidential to avoid the appearance of endorsing a particular corporation's effort or product. In high profile cases, especially in cases involving patients or research subjects who request confidentiality, both parties may want to keep the fact of ethics consultation private to avoid undue pressures and the intrusion of the press. Finally, individuals may wish to keep their financial affairs private.
These considerations need to be weighed against the desirability of transparency in a democratic society, the professional benefit to be derived from peer review and criticism, and the corporate need to meet regulatory requirements for disclosure. Full disclosure also allows the field as a whole to understand the substantive and procedural issues. The assessment of these factors is particularly complex in ongoing consultative relationships, such as with standing corporate ethics boards. These issues need to be fully addressed, and a decision about them reached, before the consultant agrees to participate. In any case, if the consultant has an academic appointment, institutional conflict of interest policies may require that the relations at least be disclosed to the institution. Moreover, consultative funding must be disclosed in any public presentation or publication.
A good consultation should contain the following components:
1) a review of the competing relevant positions and principles found in the literature, the reasoning behind them, and their implications for the issues being examined in the consultation in light of relevant empirical data; 2) an identification of that position, if any, which has found widespread acceptance in professional standards, regulations, and government or foundation reports, and a history of the evolution of that standard; and 3) the position of the consultant and the reasons for holding that position, especially if the position differs from the consensus. (Morse)
The expertise of the ASBH consists in development of these three components. In doing so, too, the consultant may need to refer to international discussions and debates, not only to material developed in the context of United States policy and regulations. This is true both because it's good to listen to alternative voices, and because the corporate response may extend beyond the United States.
It is crucial to carry out consultative obligations with integrity. In this context, that requires a fair and honest analysis involving all of the above components, not a selective opinion that anticipates the corporate interests and identifies only the material that supports the client's interests. It also requires a reasoned presentation, not merely the articulation of conclusions.
The product to be produced must be carefully defined and agreed upon in advance. Is there to be an interim or final report? Is there room for contrasting professional opinions? To whom will the report go? In order to keep the advice from being manipulated, consultants should insist that the report as authored by the consultant be sent to that level of corporate authority that has the power to consider and act on the recommendations, and that the consultant is informed about the decisions reached in response to that report. If there is to be no formal report, then what is the goal of the activity--identifying problems, or developing a greater awareness of ethical issues? Because the rate of compensation may be high and cumulative, concerns about its effect on integrity are real, and compensation needs to be structured to minimize potential conflicts of interest. This means:
1) The rate of compensation must not depend on the conclusions reached. There should be no contingency fees. Nor should compensation involve any equity interest whose value might depend on the conclusions.
2) While it is difficult to quantify these issues, a good rule of thumb is that the rate of compensation should not be so great as to compromise the ability of the consultants to drop out of the process if they are not comfortable with either the process or the product. Another good rule is that the rate of compensation should not be so great that the consultant would be uncomfortable if the rate became publicly known. A third rule is that the compensation should be commensurate with the consultant's compensation from other clients, and/or with the compensation offered by that client to other experts.
3) The compensation should be paid only for work actually performed or as a retainer against work to be performed. (Light)
In any case, in computing the rate of compensation, perks such as gifts and payment for attractive subsidized travel should be considered along with direct payments. ASBH may wish to consider arranging their compensation so that at least part of it goes toward socially worthwhile projects and activities.
Other issues may arise after the formal consultation is completed. Among these are the consultant's obligations as an advocate and as a whistle-blower, the publications and presentations permitted by the contract, and the ASBH's role as an educator.
In the normal consultative process resulting in recommendations, the consultant remains available to meet with decisionmakers, at their request, but has no further obligations to advocate for the positions presented in the recommendations. In certain circumstances, however, where the harm to affected and unaware others resulting from disregarding advice may be great, the ethics consultant, as any other consultant, retains a role of continued advocacy within the corporate context. This role may entail going beyond submitting the recommendations and beyond remaining available for further discussion; it may require that the ASBH take the initiative to approach higher level managers within the client corporation to identify the danger posed by the client's project and to advocate for the recommendations. Documenting these efforts is essential.
On occasion, the consultant may judge that continued advocacy within the client context is inadequate. In such cases, public disclosure may be required, even though it may violate the terms of the contract. One way to lessen the problem posed by the contract is to include a "whistleblowing" clause in it - although the obligation may remain whether or not the clause is there. In fairness to the client and to honor the contract as best as possible, however, the consultant should offer the client, at the highest level, the opportunity to respond before, and in place of, and public disclosure.
The prudent consultant will obtain independent legal advice before taking any action involving public disclosure. Bioethics consultants who are themselves attorneys should be certain that public statements do not breach the attorney-client privilege and subject the consultant to possible professional discipline or civil liability.
Public discussion of ethical issues, prompted by publications and public presentation, is vital both for the professional and public understanding of the issues and for informed public policy. Discussion is particularly important both about the conduct of ethics consultation and about the often contentious issues addressed in consultations.
As a general rule, then, the ASBH should try to persuade the client to incorporate into the agreement between them the right to publish the results of the consultations after it is completed, subject to protection of client secrets, to review but not censorship by corporate officials, and to the protection of the interests of other consultants involved in the consultation. This last condition means that the product of a group consultation should not be published by any individual without the permission of the group. In offering these presentations and publications, any consultative relations relevant to the presentation or publication should be fully disclosed.
