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J. Med. Ethicsdoi:10.1136/jme.2003.003848 Updated information and services can be found at: References
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Articles on similar topics can be found in the following collections To order reprints of this article go to: science. It is, for example, quite obvious to science. Theories that do not fit the facts are me that I am currently sitting at my desk.
of no use and should be discarded. But in Empirically my senses seem to confirm that I biology especially, theories can define what am more or less stationary. I may well believe counts as a fact and what does not. Sooner or later a startling new observation is made that Skene and Parker1 raise a number of concerns history we believed the earth to be stationary cannot be accommodated within the existing about religious doctrine unduly influencing at the centre of the universe. This assumption law and public policy through amicus curiae was confirmed in the Western world by the contributions to civil litigations or direct Church itself. Church doctrine confirmed that categorised. What was written off as noise lobbying of politicians. Oakley2 picks this up the earth was the stationary centre of the is heralded as fact. Thomas Kuhn called this a in the same issue with an emphasis on the paradigm shift and his paradigmatic case was Roman Catholic Church’s interest in prevent- below. When Galileo challenged this view by the Copernican revolution.5 One overarching ing the destruction of embryos for embryonic promoting the sun centred Copernican sys- stem cell research. Skene, Parker, and Oakley another—our understanding of the world is seem to be concerned mostly with religious policy. My concern is the negative effect that Copernicanism was tripartite. Firstly, the such as the Roman Catholic Church erects its doctrinal structure on the shaky foundations some scriptures. Secondly, the Copernican of a specific theoretical construct. Biology and research that is itself foundational to the system contradicted the church sanctioned developmental biology in particular are com- science of the day represented by Aristotelian paratively young sciences that are progressing incensed that, as he puts it: ‘‘Those who physics. Thirdly, was the appeal to obvious- support a total ban on embryonic stem cell ness or the immediate evidence of the senses.
diverse. By lending its support to a certain research sometimes talk as if theirs are the Of the three, only the scriptural objections theory or position within biology the Church only views based on moral principle’’.2 What were fundamentally doctrinal in nature. The seems to be at issue here though are not the appeals to science and obviousness were able balance that exists in science whereby the- moral principles of the sanctity and dignity of to be settled by empirical evidence. We now ories are valued for their explanatory power know that we are not stationary at the centre moral principles to biomedical research.
of the universe although this is still far from compatibility. External interest groups with political lobbying power may thus hijack the cally defended the sanctity and dignity of delicate process of progress in science with human life to varying degrees at different dire consequences for future advancement in times. Human life for much of the past 2000 Church’s influence on science is indirect and presence of the soul, which was thought at usually through the medium of public opi- different times to appear at various different nion and public policy. As we have seen in stages during development. Only recently, the American debate over the status of the with the advent of modern biology, has the Roman Catholic Church shifted its position to Copernicanism thus seems to be very similar embryonic stem cells this influence may be claim that the fertilised egg also qualifies as to that today regarding the status of the early decisive in the formation of public policy.
the right sort of human life.3 It should be embryo. The Roman Catholic Church tried to Indeed President Bush’s decision to effec- noted that this doctrinal change was funda- prevent Galileo from collecting empirical tively ban public funding of embryonic stem evidence using his telescope and disseminat- cell research in America is widely believed to ing his empirical evidence by banning his have set back progress in the field worldwide attempted to prevent the gathering of empiri- embryo is thus based not solely on Church cal data on the early embryo by promoting a the embryonic stem cell debate has not been doctrine but also on a specific interpretation ban on all experimentation on early embryos.
simply moral or ethical as one might assume but has openly defended a particular claim development. It is the Church’s interpretation become a paradigm for the process of theory about the biology of the early embryo. Given of the biology of early human development change in science. Science is not simply a the basic lack of empirical evidence regarding that is foundational to their current stand collection of results from experiments (or against experimentation on early embryos.
facts) but perhaps more importantly science However one of the reasons we may wish to is the interpretation of those results and the Roman Catholic Church’s choice of position experiment on early embryos is that we know planning of further experiments. For all its surprisingly little about them. In fact any chosen solely as a prop for its doctrinal position that claims to be based on a solid, philosophers of science tell us, essentially a position. This prop has then been introduced theoretical construct. The practical and the- into the secular debate on the status of the essentially misleading, as we simply do not oretical sides of science are of course inti- have the data available. The reply to this will mately connected. In fact it is well known that a researcher’s actions and observations I believe the Church’s religious fervour for embryos to make certain claims. For example are most likely guided to some degree by their its preferred doctrinal and scientific position the Roman Catholic Church likes to point out of the day is fundamentally at odds with the that the early embryo is obviously the earliest researchers develop the theories that they use process and progress of science. Science is an stage of a human life, and thus attributes to it to interpret their data. These theories fit the exploration of the physical world that is many of the rights associated with actual results (or facts) that have been previously people.4 Many would disagree with this on observed and predict new experiments to be and, historically at least, major shifts in done. The role of theory at this stage of the understanding. Over the last 400 years the being merely human with being a person. I process is often underestimated. Theories do not fall out of results. In fact in biology accept that science progresses at all and has embryo is obviously the early stages of a especially theories are often essential to preferred to maintain its doctrinal position as making sense of what is signal (result) and what is noise (artefact). Theory then is not obvious to some people but that obviousness just a bridge to the next fact or experiment cern here is I think similar to that of Skene and Parker. The Roman Catholic Church’s medicine to counteract its effects. His initial read the leaflet again and again. They may contributions to public policy are based not thought was to find something to combat his only on their moral or ethical principles, but runny nose, so he chose a product specially information such as a website and perhaps indicated for nasal congestion: ‘‘StopSnot’’.
decide to take only half the dose for half the application of those principles that is backed After reading the product information leaflet, amount of time prescribed, or simply decide by the full force of what is effectively a very however, Dr Smith felt another kind of chill powerful lobby group in many countries.
run down his spine. He was struck cold by In addition to the problem of non-compli- Like Skene and Parker, I have no answer to the contraindications, warnings, interactions, ance, the so called nocebo effect15 needs to be the problems I have raised. Historically one precautions, and adverse reactions listed in considered, whereby the patient’s mindset is thing is certain, in the future the Roman the leaflet. If he used this drug, it said, he often a key element in the appearance of either Catholic Church’s current position on the physical or imaginary side effects, as has been embryo will be judged to have been right or anxiety, agitation, insomnia, hallucinations, shown in various studies.16 17 Such an effect wrong with the wisdom of hindsight. Just as convulsions, amazement, weariness, arrhyth- may be caused by information leaflets.
we judge the Church’s persecution of Galileo mia, dizziness … . Rather than risk all of this, he thought, why not suffer a few bothersome snuffles? For his muscular aches, Dr Smith chose another drug, ‘‘Abatache’’, but the Practically any city dweller would refuse to risks described in the accompanying informa- use transport services, work tools, or recrea- tional facilities if they were supplied with included baldness, skin blistering, aseptic complete, absolute, and extensive informa- meningitis, pneumonitis, fatal hepatitis, gas- tion on the hazards using these might entail.
trointestinal perforation, blood in the urine, Precautions and warnings are usually good jaundice, kidney disease, peptic ulceration, Skene L, Parker M. The role of the church in deve- loping the law. J Med Ethics 2002;28:215–18.
mouth ulceration, visual abnormality … . So reasonable limits to avoid creating outright 2 Oakley J. Democracy, embryonic stem cell alarm. Too much information can sometimes research, and the Roman Catholic church. J Med pharmacological knowledge, Dr Smith simply opted to continue blowing his nose and suffer nificant harms through non-compliance.
3 Pope John Paul II. The Gospel of Life [Evangelium a few muscular aches. He had no desire to Vitae]. Vatican city: Vatican Polyglot Press; 1995.
play Russian roulette with his health.
4 Copland P, Gillett G. The Bioethical Structure of a information supplied by doctors can generate Human Being. J Appl Philos 2003;20(2):123–33.
5 Kuhn TS. The Copernican Revolution. Cambridge: corroborated by physical examination. As it happens all too often, the information was 6 Stolberg 8. Sterncell research is slowed by The principle of autonomy in medical ethics not as exhaustive or complete as it might be.
restrictions, Scientists say. The New York Times.
places the patient at the centre of medical In view of this, we believe that the kind of decision making about his or her care. It places particular emphasis on the importance should be reassessed. The information should be true, accurate, and easy to understand in except in rare situations,14 no patient should as complete a way as possible, but it should undergo medical treatment or surgical inter- not generate alarm that can lead to deleter- The problem of non-compliance with treat- vention without his or her fully informed ious consequences in the healthcare sector or ment and its repercussions on the clinical authorisation. This is the basis of patient- evolution of different conditions has been widely investigated.1–4 Non-compliance has also been shown to have significant economic argued that the patient must receive suffi- implications, not only as a result of product cient understandable information to make a drug’s side effects, finally decides not to follow loss but also indirectly through the complica- fully informed choice. In practice this means the doctor’s recommendation. He (or she) will tion of disease management and its subse- that someone undergoing a specific treat- try to relax, perhaps by smoking a cigarette ment receives information from at least two laced with nicotine, tar, and a number of other substances. True enough, doctors recommend giving up smoking. But who will listen to what The term ‘‘non-compliance’’ might be taken a doctor says about smoking when they appear taken, recommended lifestyle changes, and to refer both to the failure to follow a drug to be prescribing drugs truly hazardous to perhaps a warning of the hazards related to regimen and to the failure to adopt other health? After all, a pack of cigarettes only says non-compliance. At this time, they will also measures that contribute to improvement in that cigarette smoking seriously damages your be provided with information on some of the health—for example, changes in lifestyle or health. There is certainly no leaflet listing each side effects attributed to the drug being diet. This letter focuses on the former.
and every one of its possible side effects.
prescribed. Individual patients will tend to Tobacco kills, but it sometimes looks as if understand this information in a range of be the result of a number of different factors9–11 different ways, and it is well recognised that they will respond with a variety of known developed in an attempt to control it.12 13 Of Department of Legal Medicine, College of Medicine and Odontology, University of Valencia, Valencia, shown to be effective have only managed to additional information on side effects from solve the problem in specific situations over the information leaflet provided with the Correspondence to: Dr F Verdu´, Department of Legal drug itself. These leaflets tend to cite each Medicine, College of Medicine and Odontology, techniques to control non-compliance, parti- University of Valencia E G, Av/ Blasco Iban˜ez, n˚15, cularly where these are effective, raises 46010-Valencia (Spain); [email protected] interesting ethical questions about the extent to which their application constitutes an information can in some cases be so complete infringement of the patient’s right to decide or detailed that even any extremely unusual on how to manage their own health.8 Here we syndrome described in relation to the use of suggest that in some cases one factor that the drug will inevitably be listed in the leaflet 1 Morris AD, Boyle DI, McMahon AD, et al.
leads to non-compliance is the tendency to as a possible ‘‘side effect’’.
Adherence to insulin treatment, glycaemic control, provide extensive and exhaustive information and ketoacidosis in insulin-dependent diabetes on side effects in patient information leaflets.
significant effect on the likelihood that a mellitus. The DARTS/MEMO Collaboration.
patient will take the drug in question and Diabetes Audit and Research in Tayside Scotland.
may lead to significant ‘‘non-compliance’’.
2 Bruckert E, Simonetta C, Giral P. Compliance with fluvastatin treatment characterization of the One morning Dr Smith woke up with a slight about all the problems that may occur from noncompliant population within a population of cold—muscular aches, headache, chills, and using the prescribed medication, they may 3845 patients with hyperlipidemia. CREOLE nasal congestion. He decided to take some start worrying, to say the least. Some people Study Team. J Clin Epidemiol 1999;52:589–94.
3 Zarate CA Jr, Tohen M, Narendran R, et al. The clinical procedures. To do so, doctors must 3 Bravo G, Paquet M, Dubois MF. Knowledge of the adverse effect profile and efficacy of divalproex obviously also have a good understanding of legislation governing proxy consent to treatment these procedures. We recently encountered and research. J Med Ethics 2003;29:44–50.
pharmacoepidemiology study. J Clin Psychiatry 4 Doyal L. Closing the gap between professional teaching and practice. BMJ 2001;322:685–6.
4 Maetzel A, Wong A, Strand V, et al. Meta- standing in a study among junior doctors in 5 Department of Health. Reference Guide to analysis of treatment termination rates among England (Schildmann J, Cushing A, Doyal L, Consent for Examination or Treatment, Available rheumatoid arthritis patients receiving disease- Vollmann J. The ethics and law of informed modifying anti-rheumatic drugs. Rheumatology consent: knowledge, views and practice of pre 04019079.pdf (accessed 27 July 2004).
registration house officers, submitted for 6 General Medical Council. Seeking patients’ 5 Hilleman DE, Phillips JO, Mohiuddin SM, et al. A consent: the ethical considerations. London: philosophical and legal knowledge, preregis- tration house officers (PRHOs) will not be reductase inhibitors in hypercholesterolemia. ClinTher 1999;21:536–62.
6 Lazarou J, Pomeranz BH, Corey PN. Incidence of informed consent outlined by O’Neill unless, adverse drug reactions in hospitalized patients: a suffice it to say, they know what—practically meta-analysis of prospective studies. JAMA In contrast to Bravo et al’s results (in the 7 Johnson JA, Bootman JL. Drug-related morbidity same issue of the journal), almost all the and mortality. A cost-of-illness model. Arch Intern PRHOs who took part in our survey had good patient organisations to establish databanks 8 Donovan JL. Patient decision making. The missing on medical complications. Given the refer- ingredient in compliance research. Int J Technol Assess Health Care 1995;11:443–55.
ences (for example, an article by Paans, a 9 Col N, Fanale JE, Kronholm P. The role of positive result of the change in the curricu- journalist, entitled ‘‘Medical errors to be kept medication noncompliance and adverse drug lum at their particular medical school, which secret’’) and the lack of argumentation, there reactions in hospitalizations of the elderly. Arch includes extensive sessions about informed is substantial danger of misinterpretation of communication skills. However, despite their frustrate the process of increased transpar- ency. We would therefore like to respond to this by giving background information and 11 Billups SJ, Malone DC, Carter BL. The relationship study still experienced problems about their between drug therapy noncompliance and patient role in the consent process. The problems reasons for some of the choices that were characteristics, health-related quality of life, and pertained to pressure of time and lack of made with respect to the registry of compli- support by senior doctors, as well as pressure 12 Bond WS, Hussar DA. Detection methods and strategies for improving medication compliance.
that they should not. This gap between the which are often confused. From Gebhardt’s reference to the journalist’s article which 13 Arnet I, Schoenenberger RA, Spiegel R, et al.
taught to medical students and the clinical discusses the same registry of adverse out- Conviction as a basis for compliance andstrategies for improving compliance. Schweiz realities they face, and into which they are comes, but with the title referring to errors, both Gebhardt and the journalist think errors 14 Roscam Abbing H. Human rights and medicine: a If informed consent is to fulfil the purpose and adverse outcomes are the same thing.
Council of Europe convention. Eur J Health Law of respecting the autonomy and dignity of However, an error refers to the process in patients, sufficient resources are required to 15 Barsky AJ, Saintfort R, Rogers MP, et al. Non- train young doctors to do the job properly, standard performance, regardless of the out- specific medication side effects and the nocebo especially as regards their understanding of come. It has been explained by others that phenomenon. JAMA, 2002;6;287, 622–7.
16 Khosla PP, Bajaj VK, Sharma G, et al.
Background noise in healthy volunteers—a subjectivity.2 An adverse outcome refers to consideration in adverse drug reaction studies.
municators. One thing is clear: if they cannot the outcome which is unwanted but does not Indian J Physiol Pharmacol 1992;36:259–62.
17 Flaten MA, Simonsen T, Olsen H. Drug-related guidance issued by both the General Medical made. This is why the term ‘‘adverse out- Council and the Department of Health, they comes’’ is used rather than the term ‘‘com- responses that modify the drug response.
should not be doing it at all.5 6 Trusts and plications’’, since the latter term is often colleges should ensure that all supervisory 18 Myers MG, Cairns JA, Singer J. The consent form staff are aware of their responsibilities in this registration of medical complications that as a possible cause of side effects. Clin PharmacolTher 1987;42:250–3.
Gebhardt refers to is a registration of surgical adverse outcomes guided by an unambiguousdefinition of the term ‘‘adverse outcome’’, of Institute for History of Medicine and Medical Ethics and Department of Medicine III, Friedrich-Alexander- which only a small percentage is related to errors.3 Furthermore, some errors will bemissed in this registration—that is, errors which have not led to adverse outcomes.
We read with interest the papers on informed Department of Human Science and Medical Ethics, Secondly, with respect to confidentiality, consent published in a recent issue of the Queen Mary’s School Of Medicine and Dentistry, this is relevant in particular for the initial Journal of Medical Ethics.1 Whatever their years of such a registry during which it is thoroughly tested and accuracy of the regis- tioned some aspects of the duty to respect tration may vary widely between participants.
Institute for History of Medicine and Medical Ethics, Friedrich-Alexander-University Erlangen-Nuremberg, Nothing is gained by false positive signals informed consent for therapeutic interven- with respect to the high incidence of adverse outcomes in some hospitals, except perhaps competent adult patients are entitled to a Correspondence to: J Schildmann, Institute for History by flashing headlines in newspapers. In this core of basic information about their treat- of Medicine and Medical Ethics and Department of respect one may compare the development of ment options. There was also consensus that Medicine III, Friedrich-Alexander-University, such a national registry to the development of training in the process of obtaining consent is Erlangen-Nuremberg, Germany; [email protected] important. In our experience, two dimensions about confidentiality and thorough testing of such training are of particular interest. On until proved safe. Moreover, a pharmaceuti- the one hand, students require good theore- tical understanding of the ethical and legal markets a new drug without proper research.
It is intended that after this initial period, 1 Symposium on consent and confidentiality. J Med national adverse outcome data will become other hand, they need practical training in the relevant communication skills and how 2 O’Neill O. Some limits of informed consent. J Med to apply them to obtain consent for specific some means empirical findings could influ- aware that these data need to be interpreted ence our ranking of the normative principles.
Earlier in the article, they make an even interested in the experience of doctors or stronger claim about the influence of empiri- hospitals to treat certain diseases or to perform certain operations, since the ques- principles. They suggest that, if it were hospital? This simple question is not easy to tion they want answered is ‘‘What is the best demonstrated empirically that some patients answer for individual patients who need a place to go to for this type of problem?’’. That prefer to delegate medical decisions to health good diagnosis and the best treatment. The this doctor or hospital probably has a high care professionals, a serious challenge would adverse outcome record is not relevant, since be levied against the normative assumptions this may well be explained by the complex underlying the principle of respect for auton- organisations have published several con- patients who are referred to more experi- omy, at least under the mandatory autonomy sumer guides for specific diseases to help enced doctors. As argued in a previous paper,3 view, which holds that patients not only have patients find their way in the labyrinth of the it is essential that there is an increased a right but also an obligation to act autono- mutual trust between the medical profession mously (p 103).1 In the light of many recent many difficulties in getting access to relevant and patients’ organisations that supports a empirical studies challenging the centrality of information from doctors’ organisations and combined effort to improve the quality and patient autonomy and shared decision mak- availability of patient information. Such ing in bioethical theory, I think it is instruc- wants to cooperate with these organisations initiatives will benefit both patients and tive to evaluate the means by which empirical doctors and are too important to be frustrated findings, like those offered in Joffe et al, by references to ‘‘powers that must be kept available. A joint project for a databank on ethical principles. In particular, I would be best practices started in September 2003.
interested in how these authors propose that Patients are not interested in black lists of Association of Surgeons in the Netherlands, their data led them to the normative conclu- In the last paragraph of their article, Joffe make a well informed choice for a doctor or et al write: ‘‘we do not recommend that Department of Medical Decision Making, Leiden on objective measures such as the risk of University Medical Centre, Leiden, the Netherlands determine ethical frameworks. We do, how- infection in a hospital, the specific skills of a ever, believe that data such as those pre- doctor, how many patients with this specific Correspondence to: Dr P J Marang-van de Mheen, disease a doctor treats a year, etc. Patients Association of Surgeons in the Netherlands; p.j.
sented here can contribute to the search for would also like to receive subjective infor- reflective equilibrium in bioethics’’(p 107).
The term ‘‘reflective equilibrium’’, as the mation on a specific hospital or doctor: How is the communication between a doctor and Rawls. At least in its first instance, it refers to a way of constructing a moral theory by balancing one’s considered moral judgements needed?, etc. This experience based infor- 1 Gebhardt DOE. Patient organisations should also establish databanks on medical complications.
against one’s moral principles, until one’s judgements and principles form a consistent 2 Hayward RA, Hofer TP. Estimating hospital deaths set—that is, a moral theory (p 288).2 Joffe et due to medical errors: preventability is in the eye of al’s idea seems to be that by surveying with organisations of healthcare providers the reviewer. JAMA 2001;286:415–20.
patients’ perspectives they will be able to 3 Kievit J. Regarding covering-up: a database for capture one side of this equilibrium, consid- registration of adverse outcomes [in Dutch]. Med ered moral judgements, or moral principles (they do not specify which), and in so doing translate the data into consumer information 4 Marshall MN, Shekelle PG, Leatherman S, et al.
that meets the needs of the patients, based The public release of performance data. What do contribute to the desired end: a consistent we expect to gain? A review of the evidence.
ethical framework to govern medical encoun- on research and experiences of patients.
important information accessible for doctors patient community. Whatever the merits of this goal, however, Joffe et al fail to capture either the considered moral judgements or the moral principles of those they survey andso fail to contribute to the moral theory they In the Journal of Medical Ethics, Joffe et al Finally, what does the patient want? (see recently published an article titled ‘‘What do box 1). International research has shown that patients value in their hospital care? An patients do not use public information on empirical perspective on autonomy centred moral capacities, which he considers analo- bioethics’’.1 This empirical study evaluates gous to our linguistic capacities, are ‘‘most whether patients’ willingness to recommend likely to be displayed without distortion’’— because, among other reasons, they do not their hospital to others is more strongly for example, those offered without hesita- understand and do not trust these data.4 This associated with their belief that they were tion, given without strong emotions like fear, also applies to adverse outcomes data. For treated with respect and dignity than with interpreting the incidence of hospital specific their belief that they had an adequate say in interests (p 47).3 The distinction between adverse outcomes it is important to know the their treatment.* Joffe et al go on to suggest considered judgements and judgements gen- context—for example, since older, sicker, and that confirmation of these empirical hypoth- more complex patients have higher probabil- moral theory for a particular community— ities of adverse outcomes.3 It is therefore vital elevating the principle of respect for persons to establish a reliable registry which can be to the level that the principle of respect for autonomy currently enjoys in our model of reflect the respondents’ real moral sensibil- professionals and the public. For this reason, the ideal patient–physician relationship (p ities, and not those stemming from super- 104).1 In other words, they suggest that by ficial prejudices or their mood on the day * Joffe et al also evaluate whether patients’ important questions, however, for research- (NPCF) are collaborating with respect to the reports that they had confidence and trust in ers, who, like Joffe et al, are using the concept national surgical adverse outcome registry, in their health care providers significantly pre- of reflective equilibrium: (1) precisely how particular, to produce information that is considered do considered judgements have to relevant for patients about treatment and hospital to others. For simplicity’s sake, I be if they are to count; and, more practically, hospital choices. Supported by the interna- address only Joffe et al’s treatment of the (2) how can a researcher know whether he or tional literature, the NPCF holds the view respect for persons and the respect for auton- she is collecting them—that is, what survey that patients are not primarily interested in method, if any, is appropriate for the task? Although it is difficult to give a positive better predictor of patient satisfaction than limitations that its size produces: does this answer to these questions (and I will not him or her acting with respect for autonomy, survey really address what we mean by the attempt to do so here), some survey methods, Joffe et al conclude that the principle of such as the mailed questionnaires that Joffe respect for persons should be assigned as et al used, seem particularly inadequate.
much importance, ethically speaking, as the Rawls suggests that certain external condi- principle of respect for autonomy. As should there is a gap between the empirical hypoth- be clear, this conclusion does not follow from eses the study confirms and the normative judgements: ‘‘the person making the [con- Rawls’s conception of how one constructs a conclusions its authors would like to draw sidered moral] judgment is presumed … to moral theory. In a Rawlsian view,`3 6 a moral from it. In their article Joffe et al hoped to have the ability, the opportunity and the bridge this gap by invoking Rawls’s notion of desire to reach a correct decision (or at least, patients hold, not whether those principles the reflective equilibrium. As I have explored, not the desire not to)’’ (p 48).3 Very likely, are associated with patient satisfaction. Joffe however, the study does not contribute to however, many of Joffe et al’s respondents et al seem to be operating with an underlying either side of the reflective equilibrium they lacked the necessary ability, opportunity, or utilitarian assumption to the effect that what imply, and, thus, they fail to demonstrate desire to reflect on their moral judgements we ought to do ethically speaking is whatever how their findings challenge the centrality of when responding to the questionnaire they will lead to the greatest patient satisfaction.
received in the mail. Furthermore, even if a Although there may be reasons for accepting this utilitarian assumption (which Joffe et al Joffe et al’s failures are instructive, how- considered judgements, there is no way to do not provide), certainly there are others for ever, insofar as they suggest how we could distinguish these from those made by respon- rejecting it. For instance, although patient better bridge the gap between research and dents who lacked the requisite ability or satisfaction may give a hospital a very good theory. The use of the reflective equilibrium desire. Although the size of Joffe et al’s study reason to change a policy, we probably do not in empirical research has promise, provided is of value for its ability more accurately to want to say this reason is a good ethical researchers are clear about: (1) how to define reflect a population’s response to its survey reason. It is just good business sense. This is considered moral judgements and/or princi- questions, because of the practical limitations ples; (2) how their methods capture these that come with its size, the study falls short principles that Joffe et al evaluate. Respect judgements and/or principles reliably; (3) of capturing patients’ considered moral jud- traditionally viewed deontologically—that is, judgements strengthens rather than weakens it terms of duties or rights, which are valued bioethical theory; and (4) how their instru- equilibrium, as Joffe et al’s, faces a second for their own sake rather than the conse- challenge: why do we want people’s consid- quences (such as patient satisfaction) that principles they mean to assess. In addition, empirical research can contribute to bioethics theories of ethics in the first place? In his considerations take us far from patients’ by questioning the assumptions implicit or influential critique of reflective equilibrium, actual moral views, the very things Joffe et explicit in our normative views. Joffe et al try al, by invoking Rawls’s reflective equilibrium, introduction to their article (p 103)1 that Lastly, there is a question of their instru- patients’ desire to delegate decision making ment’s validity. As I have been arguing, Joffe challenges the mandatory autonomy view.
et al claim to assess whether patients are However, if empirical findings are to defeat aparticular normative principle, the assump- treated according to the principles of respectfor autonomy and respect for persons. Yet, tion that those findings challenge must be their single item assessing respect for auton- omy—the question, ‘‘do you feel you had principle. For instance, without showing that your say?’’—does not do the principle justice.
patients’ desire for autonomy is necessary forour holding the mandatory autonomy view, The principle of autonomy not only requires the studies that Joffe et al cite, even if valid, that the health care provider asks the patient can be interpreted variously as devaluing the for his or her opinion, but also that the provider acts on the patient’s opinion. Their ing that we better educate patients on the instruments are similarly inadequate for the value of autonomy. This normative question principle of respect for persons, which, they If moral judgements are liable to reflect suggest, includes ‘‘autonomy, fidelity, vera- superficial prejudices, one could argue, con- Empirical researchers have the potential to city, avoiding killing, and justice’’, as well as sidered moral judgements are liable to reflect contribute substantially to bioethics, but their ‘‘respect for the body, respect for family, deep seated ones. Surely this prejudice is respect for community, respect for culture, something ethicists would like to overcome, empirical rigor that comes from truly inter- respect for the moral value (dignity of the not codify. While I do no think this challenge individual), and respect for the personal is insurmountable,À5 it does demand that informed by a careful reflection on the proper narrative’’(p 104).1 How are we to know researchers justify the inclusion of considered relationship between descriptive and norma- whether patients had all or any of these in judgements in ethical theory before using the tive ethics.7 Joffe et al take us part of the way mind when they answered the question: ‘‘Did method of reflective equilibrium. Joffe et al down that path. An exciting research itiner- you feel like you were treated with respect and dignity while you were in the hospital?’’ Joffe et al’s study is susceptible to a second Joffe et al acknowledge that these ethical line of critique. Even if the study’s use of concepts are a bit unwieldy for a survey of mailed surveys is appropriate, it fails to manageable length. However, these practical capture either patients’ considered judge- considerations should be used not only to ments or principles, because, put simply, it excuse the study but also to question its does not ask for considered judgements or ability to clarify the ethical concepts it claims principles. Instead, it asks patients whether providers respected their person or respected regardless of the survey’s scale and the their autonomy, and then tests patients’ responses to these questions against whether ` I say ‘‘a Rawlsian view’’ rather that ‘‘Rawls’s they report being satisfied with their care. If a view’’ because, in his theory of Justice, Rawls provider’s acting with respect for persons is a advocates balancing a single person’s consid- 1 Joffe S, Manocchia M, Weeks JC, et al. What do ered moral judgements (for example, Rawls’s or patients value in their hospital care? An empirical À See, for instance, Delden and Theil,5 in which his reader’s) with a single person’s moral perspective on autonomy centred bioethics. J Med the authors argue convincingly that a reflective principles (p 50).3 Although he later gestures equilibrium-like method may be valuable for towards reflective equilibrium as an exercise 2 Rawls J. The independence of moral theory. In: capturing the norms of health care providers that involves the considered moral judgements Freeman S, eds. Collected papers/John Rawls.
and that knowledge of these norms may guide of others (p 8),6 it is probably safer to say 3 Rawls J. A theory of justice. Cambridge, MA: sphere of intimate examinations. It concerns consent be obtained. Neither the diminished the moral obligations of medical students responsibility of the medical student, nor his 4 Haslett DW. What is wrong with reflective faced with ethically dubious situations. In status as an apprentice, removes the need for short, what should a ‘‘good’’ medical student Indeed, far from absolving him from moral Delden JJM, Thiel GJMW. Reflective equilibriumas a normative-empirical model in bioethics. In: In an article on the scope of medical ethics, inquiry, these factors should encourage a Professor Raanan Gillon recounts two experi- process of ethical questioning. This exercise equilibrium: essays in honour of Robert Heeger.
ences from his days as a medical student.3 The first describes his teacher’s refusal to flourishing as a morally responsible future grant an abortion to a 14 year old girl on the doctor. To paraphrase Nick Hornby: ‘‘it’s not 6 Rawls J. Political liberalism. New York: Columbia grounds that she was ‘‘a slut’’; the second his enough to just be a medical student’’.
own refusal to examine a scrotal lump on a 7 Sulmasy DP, Sugarman J. The many methods of medical ethics (or, thirteen ways of looking at ablackbird). In: Sugarman J, Sulmasy DP, eds.
examined by five other students. Gillon’s The author thanks Raanan Gillon, George Freeman, Methods in medical ethics. Washington, DC: objections were very much the exception.
Richard Ashcroft, and Anna Smajdor for their Georgetown University Press, 2001:3–18.
When these events took place in the 1960s, medical students were simply expected tofollow their teachers’ orders and to absorb their evident wisdom without question. Since Medical Ethics Unit, Department of Primary Health Care & General Practice, Imperial College School of then, medical ethics has developed from an ill The public revelation in 2003 that medical discipline in its own right, with specific journals and associations, and a place in the 1 Coldicott Y, Pope C, Roberts C. The ethics of journals. Using this case as a springboard students at Bristol, however, the growing intimate examinations—teaching tomorrow’s for discussion, I will argue that medical emergence of medical ethics has not dispelled schools should encourage students to raise 2 Nesheim B-I. Commentary: Respecting the the awkward climate of unquestioned rever- their ethical concerns and call for a change of patient’s integrity is the key. BMJ 2003;326:100.
ence towards teachers. Many of the students policy making it easier for students to do so. I 3 Gillon R. What is medical ethics’ business? felt uneasy about the examinations, but were will also address the question of medical Advances in Bioethics 1998;4:31–50.
too intimidated to voice their concerns: ‘‘You 4 Hornby N. How to be good. London: Penguin, students’ moral obligations towards their couldn’t refuse comfortably. It would be very patients, and conclude that medical students awkward, and you’d be made to feel inade- ought to express their discontent when faced quate and stupid’’, commented a fourth year with unethical practices or attitudes.
student who participated in the study. It In early January 2003, a study appeared in the British Medical Journal revealing that strive to foster a climate more conducive to open discussion on ethical issues between examinations on anaesthetised patients were students and teachers. Students should not have to perform heroic acts of courage to The JME editorial office has now moved to patient consent.1 Although the study did not raise ethical concerns. In light of medical generate the firestorm of controversy many ethics’ place in the curriculum, the situation expected, it engendered much discussion on ethical issues surrounding informed consent +44 (0) 207 383 6439. Fax: +44 (0) 207 383 and patient autonomy, as well as stressing patient’s autonomy one day, but witness an 6668. The point of contact is Nayanah Siva, obvious violation of this principle by their teachers the next. For the subject to be of any however, the case of intimate examinations use, students must not only be allowed, but is, to my mind, relatively uninteresting. If we positively encouraged to put into practice their agree that it is wrong for doctors to perform a The IME wishes to award 10 bursaries of up vaginal examination on a conscious person ‘‘inadequate and stupid’’. If a student’s without their consent, then it follows that it Electives, or exceptionally Special Study will still be wrong if that same person is discussion with the teacher, there should be Modules, on issues in medical ethics.
Medical students, jointly with their super- chaotic if a person suddenly lost his rights through a committee specifically set up for visor, are invited to apply by 28th February that purpose, or through the school’s medical 2005. Application is to be done via email, explaining the project’s relevance to medical examination and so cannot be harmed is, at matter thoroughly. Medical ethics is, after requested. An outline study protocol and pro- revealed tomorrow that sociology students It is nonetheless all too easy to blame the ject budget should in included or attached.
had placed hidden cameras in the cubicles of medical establishment and individual tea- public toilets to study urination habits. Most chers for the unethical behaviour of students, people would be understandably outraged by as if the appellation ‘‘medical student’’ this violation of privacy, even though the shielded individuals from moral fault. In Successful applicants will be informed by victims were not harmed by it at the time.
Nick Hornby’s novel ‘‘How to be good’’, the This is based on the belief that a person’s rights can be violated without that person’s mechanically repeating ‘‘I must be good. I’m As for the conflict between the educational a doctor’’.4 It is only later that she acknowl- need of students and the respect for patient edges that her justification is too facile: ‘‘it’s autonomy, it would only arise if an over- not enough to just be a doctor, you have to be whelming number of patients refused to be a good doctor’’. Students, however wide eyed examined. This is an unlikely scenario. In a or intimidated, are still capable of indepen- commentary on Dr Coldicott’s study, Britt- dent thought. Their personal values should An error has been pointed out in the affillia- Ingjerd Nesheim, a professor of obstetrics and not vanish as they put on the white coat, just tion for R Andorno, author of The right not to gynaecology in Norway, affirms that obtain- as a patient’s rights should not evaporate ing patient consent to student examinations when under anaesthetic. Although the reluc- 2004:30;435–439). The correct affiliation is is not difficult, as long as the patient feels tance of many Bristol students to perform the Interdepartmental Center for Ethics in the comfortable with the arrangements.2 Yet for examinations is comforting, it seems that Sciences and Humanities (IZEW), University none acted on their qualms by declining to question which extends beyond the recondite perform the procedure or asking that proper
4. Context-rich Problems Introduction What Are the Characteristics of a Good Group Problem?Twenty-one Characteristics That Can Make a Problem DifficultHow to Judge If a Problem is a Good Group Problem Linear Kinematics Problems One-dimensional Motion at a Constant VelocityOne-dimensional Motion at a Constant AccelerationOne-dimensional Motion, Both Constant Velocity andTwo-dimensiona