Dear Editor

In the Journal of Medical Ethics, Joffe et al. recently published an article titled:
What do patients value in their hospital care? An empirical perspective on autonomy centred bioethic [1]
This empirical study evaluates whether patients’ willingness to recommend their hospital to others is more strongly associated with their belief that they were treated with respect and dignity than with their belief that they had adequate say in their treatment.[see note 1] Joffe et al. go on to suggest that confirmation of these empirical hypotheses would constitute a prescription for elevating the principle of respect for persons to the level that the principle of respect for autonomy currently enjoys in our model of the ideal patient-physician relationship ([1] p.104). In other words, they suggest that by some means empirical findings could influence our ranking of the normative principles. Earlier in the article, they make an even stronger claim about the influence of empirical data on our acceptance of normative principles. They suggest that if it were demonstrated empirically that some patients prefer to delegate medical decisions to health care professionals a serious challenge would be levied against the normative assumptions underlying the principle of respect for autonomy, at least under the mandatory autonomy view, which holds patients not only have a right but also an obligation to act autonomously ([1] p.103). In light of many recent empirical studies challenging the centrality of patient autonomy and shared decision-making in bioethical theory, I think it is instructive to evaluate the means by which empirical findings, like those offered in Joffe et al., strengthen or weaken our arguments for ethical principles. In particular, I will be interested in how Joffe et al. propose their data lead them to the normative conclusions they reach.

In the last paragraph of their essay, Joffe et al. write, “we do not recommend that patients’ perspectives should unilaterally determine ethical frameworks. We do, however, believe that data such as those presented here can contribute to the search for reflective equilibrium in bioethics”([1] p.107). The term “reflective equilibrium,” as the authors note, was introduced by John Rawls. At least in its first instance, it refers to a way of constructing a moral theory by balancing one’s considered moral judgments against one’s moral principles, until one’s judgments and principles form a consistent set—that is, a moral theory (Rawls [2], p.288). Joffe et al.’s idea seems to be that by surveying patients’ perspectives they will be able to capture one side of this equilibrium, considered moral judgments or moral principles (they do not specify which), and in so doing contribute to the desired end: a consistent ethical framework to govern medical encounters, built (at least in part) from the principles and moral judgments of the patient community. Whatever the merits of this goal, however, Joffe et al. fail to capture either the considered moral judgments or the moral principles of those they survey and so fail to contribute to the moral theory they seek to construct.

Rawls defines considered moral judgments as those judgments in which our moral capacities, which he considers analogous to our linguistic capacities, are “most likely to be displayed without distortion”--e.g. those offered without hesitation, given without strong emotions like fear, and made in the absence of conflicting interests (Rawls [3] p.47). The distinction between considered judgments and judgments generally is important. When constructing a moral theory for a particular community—for instance, the patient community—we want to use only those judgments that reflect the respondents’ real moral sensibilities, and not those stemming from superficial prejudices or their mood on the day they happen to respond. This raises two important questions, however, for researchers, like Joffe et al., using the reflective equilibrium: (1) precisely how considered do considered judgments have to be if they are to count, and, more practically, (2) how can a researcher know whether he or she is collecting them (i.e. what survey method, if any, is appropriate for the task)? While it is difficult to give a positive answer to these questions (and I will not attempt to do so here), some survey methods, such as the mailed questionnaires Joffe et al. use, seem particularly inadequate. Rawls suggests certain external conditions favor the formation of considered judgments: “the person making the [considered moral] judgment is presumed…to have the ability, the opportunity and the desire to reach a correct decision (or at least, not the desire not to)”(Rawls [3], p.48). Very likely, however, many of Joffe et al.’s respondents lacked the necessary ability, opportunity, or desire to reflect on their moral judgments when responding to the questionnaire they received in the mail. Furthermore, even if a number of patients did offer legitimate considered judgments, there is no way to distinguish these from those made by respondents’ who lacked the requisite ability or desire. While the size of Joffe et al.’s study is of value for its ability to more accurately reflect a population’s response to its survey questions, because of the practical limitations that come with its size, the study falls short of capturing patients’ considered moral judgments.

Any empirical approach, like Joffe et al.’s, using reflective equilibrium faces a second challenge: why do we want peoples’ considered moral judgments to influence our ethical theories in the first place? In his influential critique of reflective equilibrium, DW Haslett writes, “given the wide differences between people’s considered moral judgments, and given that these differences are, as we know, largely just a reflection of differences in upbringing, culture, religion, and so on, it would appear that, far from having a reason for giving people’s considered moral judgments initial credibility, we have instead a reason for initial skepticism”.[4] If moral judgments are liable to reflect superficial prejudices, one could argue, considered moral judgments are liable to reflect deep-seated ones. Surely this prejudice is something ethicists would like to overcome, not codify. While I do no think this challenge is insurmountable, [see note 2] it does demand that researchers justify the inclusion of considered judgments in ethical theory before using the method of reflective equilibrium. Joffe et al. have failed to do this.

Joffe et al.’s study is susceptible to a second line of critique. Even if the study’s use of mailed surveys is appropriate, the study fails to capture either patients’ considered judgments or principles, because, put simply, it doesn’t ask for considered judgments or principles. Instead, it asks patients whether providers respected their person or respected their autonomy, and then tests patients’ responses to these questions against whether they report being satisfied with their care. If a provider’s acting with respect for persons is a better predictor of patient satisfaction than her acting with respect for autonomy, Joffe et al. conclude that the principle of respect for persons should be assigned as much importance ethically speaking as the principle of respect for autonomy. As should be clear, this conclusion does not follow from Rawls’s conception of how one constructs a moral theory. In a Rawlsian view .[see note 3] , a moral theory requires knowing which principles patients hold, not whether those principles are associated with patient satisfaction. Joffe et al. seem to be operating with an underlying utilitarian assumption to the effect that what we ought to do ethically speaking is whatever will lead to the greatest patient satisfaction. Though there may be reasons for accepting this utilitarian assumption (which Joffe et al. do not provide), certainly there are others for rejecting it. For instance, though patient satisfaction may give a hospital a very good reason to change a policy, we probably do not want to say this reason is a good ethical reason. It is just good business sense. This is an especially important point given the principles that Joffe et al. evaluate. Respect for autonomy and respect for persons are traditionally viewed deontologically--that is it terms of duties or rights, which are valued for their own sake rather than the consequences (e.g. patient satisfaction) that they produce. In any case, these utility considerations take us far from patients’ actual moral views, the very things Joffe et al., by invoking Rawls’s reflective equilibrium, propose to capture.

Lastly, there is a question of their instrument’s validity. As I have been arguing, Joffe et al. claim to assess whether patients are treated according to the principles of respect for autonomy and respect for persons. Yet, their single item assessing respect for autonomy - the question, "do you feel you had your say?" - does not do the principle justice. The principle of autonomy not only requires that the health care provider ask the patient for his opinion, but also that she act on the patient’s opinion. Their instruments are similarly inadequate for the principle of respect for persons, which, they suggest, includes "autonomy, fidelity, veracity, avoiding killing, and justice" as well as "respect for the body, respect for family, respect for community, respect for culture, respect for the moral value (dignity of the individual), and respect for the personal narrative"(104). How are we to know whether patients had all or any of these in mind when they answered the question, “did you feel like you were treated with respect and dignity while you were in the hospital?” Joffe et al. acknowledge that these ethical concepts are a bit unwieldy for a survey of manageable length. However, these practical considerations should be used not only to excuse the study but also to question its ability to clarify the ethical concepts it claims to assess. They should prod us to ask, regardless of the survey’s scale and the limitations its size produces, does this survey really address what we mean by the principles of respect for autonomy and respect for persons?

With any empirical study in bioethics, there is a gap between the empirical hypothesizes the study confirms and the normative conclusions its authors would like to draw from it. In their article Joffe et al. hoped to bridge this gap by invoking Rawls’s notion of the reflective equilibrium. As I have explored, however, Joffe et al.’s study does not contribute to either side of the reflective equilibrium they imply, and, thus, they fail to demonstrate how their findings challenge the centrality of autonomy and shared decision-making in bioethics.

Joffe et al.’s failures are instructive, however, in so far as they suggest how we might better bridge research and theory. The use of the reflective equilibrium in empirical research has promise, provided researchers are clear about:
(1) how to define considered moral judgments and/or principles,
(2) how their methodology capture these judgments and/or principles reliably,
(3) how the inclusion of considered moral judgments strengthens rather than weakens bioethical theory, and
(4) how their instruments are valid for the judgments or principles they mean to assess.

In addition, empirical research can contribute to bioethics by questioning the assumptions implicit or explicit in our normative views. Joffe et al. try to do just this when they argue that patients’ desire to delegate decision-making challenges the mandatory autonomy view, in the introduction of their paper ([1] p.103). However, if empirical findings are to defeat a particular normative principle, the assumption those findings challenge must be logically necessary for our holding that principle. For instance, without showing patients’ desiring autonomy is necessary for our holding the mandatory autonomy view, the studies that Joffe et al. cite, even if valid, can be interpreted variously as devaluing the mandatory autonomy view or as recommending that we better educate patients on the value of autonomy. This normative question cannot be settled empirically.

Empirical researchers have the potential to contribute substantially to bioethics, but their work needs the kind of philosophical and empirical rigor that comes from truly interdisciplinary collaboration and must be informed by a careful reflection on the proper relationship between descriptive and normative ethics (Sulmasy and Sugarman).[4] Joffe et al. take us part of the way down that path. An exciting research itinerary lies ahead.

References

(1) Joffe S, Manocchia M, Weeks J C, Cleary P D. What do patients value in their hospital care? An empirical perspective on autonomy centred bioethics. J Med Ethics 2003; 29:103-108.

(2) Rawls J. The independence of moral theory. In: Freeman S, editor. Collected papers / John Rawls. Cambridge, MA: Harvard University Press, 1999. p.286-302.

(3) Rawls J. A theory of justice. Cambridge, MA: Harvard University Press, 1971.

(4) Haslett DW. What is wrong with reflective equilibria? The Philosophical Quarterly 1987; 36(148):305-311.

(5) Sulmasy DP, Sugarman J. “The many methods of medical ethics (or, thirteen ways of looking at a blackbird).” In: Sugarman J, Sulmasy DP, editors. Methods in Medical Ethics. Washington, D.C.: Georgetown University Press, 2001.

(6) Delden JJM, Thiel GJMW. Reflective equilibrium as a normative-empirical model in bioethics. In: Burg W, Willligenburg T, editors. Reflective equilibrium: essays in honour of Robert Heeger. Dodrecht: Kluwer Academic Publishers, 1998. p. 251-259.

(7) Rawls J. Political liberalism. New York: Columbia University Press, 1993.

Notes

Note 1:
Joffe et al. also evaluate whether patients’ reporting they had confidence and trust in their health care providers significantly predicted whether they would recommend their hospital to others. For simplicity’s sake, I only address Joffe et al.’s treatment of the respect for persons and the respect for autonomy principles in this response.

Note 2:
See, for instance, Delden and Theil,[6] in which the authors convincingly argue that a reflective equilibrium-like methodology may be valuable for capturing the norms of health care providers and that knowledge of these norms may guide individual providers.

Note 3:
I say “a Rawlsian view” rather than “Rawls’s view” because in his Theory of Justice Rawls advocates balancing a single person’s considered moral judgments (e.g. Rawls’s or his reader’s) with a single person’s moral principles (Rawls [3]p.50). Although he later gestures towards reflective equilibrium a an exercise that involves the considered moral judgments of others (Rawls [7], p.8), it is probably safest to say “Rawslian.”

Dear Editor

Dr. Fessler discusses in detail the implications of starvation induced psychological changes for the ethical treatment of hunger strikers,[1] but cannot bring himself in his conclusions to deviate from respecting the competent hunger striker's decision to continue to fast until death. This is clearly also the virtually unanimous Western ethical consensus, giving autonomy the priority over life.

In another publication [2] I reported a contrary decision of an Israeli district court in the case of a hunger striking prisoner which stated categorically that when human life conflicts with human dignity the preservation of life takes precedence. In this case, as well as others, including one cited in the International Red Cross Committee document on the subject, the prisoner, after being force-fed, expressed his gratitude at his life having been saved against his expressed opposition. This is not infrequently the case. Hunger strikers who are competent by all standard criteria may often be trapped into continuing onto death by their own rhetoric and pride, as well as by their embarrassment from their political compatriots. When force-fed they can retain their pride and conviction at not having capitulated- and, as a bonus, keep their lives as well, enabling them to use their talents in their continuing struggle for their cause. It is sad that the rigid adherence to the value of autonomy at all costs has caused the death of so many young and often idealistic young people.

References

(1) Fessler DMT. The implications of starvation induced psychological changes for the ethical treatment of hunger strikers. J Med Ethics 2003;29:243-247.

(2) Glick SM. Unlimited human autonomy - a cultural bias? N Engl J Med 1997 Mar 27;336(13):954-6.

Dear Editor

Arthur Schafer has a good point in regards to the commercialization of IP, but how can anyone agree with such a paranoid and polorazing view of the drug companies. Banning them completely would only create an underground of business transactions. At least with gifts to the Universities we know who and where the money is dispersed and for what.

It is time the public became more involved in this discussion and that is why we are having a Conference November 4-5, in Toronto to discuss the Scientist as Entrepreneur, with Dr Nancy Olivieri. This is not a controversy that is going to go away and I applaud Professor Schafer for not pretending that it doesn't exist.

Dear Editor

Firstly, I have a great deal of admiration for this book, which provides much stimulating and thoughtful debate. As such, the book invites a certain amount of friendly criticism from a non-academic perspective.

What is significantly missing is any inclusion of the 'service users' authentic voice or information for students on the 'user/survivor' movement across UK and Europe at least. The history of the movement should by now be part of any mental health course but this is still rare. There is concern about using the 'case histories' without consent even where they are anonymised - this just pays lip service to rights which can so easily be sacrificed to expediency, including for publications. It is important though the practice reveals an unacceptable imbalance of power in the relationship between health service users and researchers etc. which is not addressed or highlighted for students. With only intellectual debate about such issues the reality for those on the receiving end can be missed. Another significant absence is input from any non-white European contributors - in a modern Uk this is a serious omission. It would also have been good to see some of the abuses in psychiatry identified as having taken place in UK as well as in other countries such as Russia. The area of research invites debate as the author claims too much intrusion or hold ups by perhaps unqualified LRECs is limiting devlopment - whereas lack of knowledge is a problem sometimes proper checks are worth the wait unless more situations Alderheys are to happen. Once involved in an area it can come to seem all important - which is why an inclusive debate about any aspect of healthcare is vital. This book stimulates that in many ways but does not include a wide enough inclusion of views in my mind,to be wholly in agreement of it's success - A follow up would be good. It is one I would want students to read though.