Rationality and the refusal of medical treatment: a critique of the recent approach of the English courts.

This paper criticises the current approach of the courts to the problem of patients who refuse life-saving medical treatment. Recent judicial decisions have indicated that, so long as the patient satisfies the minimal test for capacity outlined in Gillick, the courts will not be concerned with the substantive grounds for the refusal. In particular, a 'rationality requirement' will not be imposed. This paper argues that, whilst this approach may accord with our desire to uphold the autonomy of a patient who refuses treatment on religious grounds, it fails to address the problem of the deluded decision-maker whose refusal is based on wrongheaded reasons (and where talk of autonomy is a disservice). The difficulty can be overcome, however, by recognising that the two patients in fact inhabit at distinct realms-the non-rational and the irrational. The test for capacity, at least in the context of life-saving treatment, should revert accordingly to the older concept of 'sound mind', to disallow refusals of an irrational (as opposed to a non-rational) nature.     

Treating competent patients by force: the limits and lessons of Israel's Patient's Rights Act

Competent patients who refuse life saving medical treatment present a dilemma for healthcare professionals. On one hand, respect for autonomy and liberty demand that physicians respect a patient's decision to refuse treatment. However, it is often apparent that such patients are not fully competent. They may not adequately comprehend the benefits of medical care, be overly anxious about pain, or discount the value of their future state of health. Although most bioethicists are convinced that partial autonomy or marginal competence of this kind demands the same respect as full autonomy, Israeli legislators created a mechanism to allow ethics committees to override patients' informed refusal and treat them against their will. To do so, three conditions must be satisfied: physicians must make every effort to ensure the patient understands the risks of non-treatment, the treatment physicians propose must offer a realistic chance of significant improvement, and there are reasonable expectations that the patient will consent retroactively. Although not all of these conditions are equally cogent, they offer a way forward to assure care for certain classes of competent patients without abandoning the principle of autonomy altogether. These concerns reach past Israel and should engage healthcare professionals wary that respect for autonomy may sometimes cause avoidable harm.     

Autonomy, religious values, and refusal of lifesaving medical treatment.

The principal question of this paper is: Why are religious values special in refusal of lifesaving medical treatment? This question is approached through a critical examination of a common kind of refusal of treatment case, one involving a rational adult. The central value cited in defence of honouring such a patient''s refusal is autonomy. Once autonomy is isolated from other justificatory factors, however, possible cases can be imagined which cast doubt on the great valuational weight assigned it by strong anti-paternalists. This weight is sufficient, in their estimation, to justify honouring the patient''s refusal. There is thus a tension between the strong anti-paternalist''s commitment to the sufficiency of autonomy and our intuitions respecting such cases. Attempts can be made to relieve this tension, such as arguing that patients aren''t really rational in the circumstances envisaged, or that other values, such as privacy or bodily integrity, if added to autonomy, are sufficient to justify an anti-paternalistic stance. All such attempts fail, however. But what does not fail is the addition of religious freedom, freedom respecting a patient''s religious beliefs and values. Why religious freedom reduces the tension is then explained, and the specialness of religious beliefs and values examined.     

Assessing competence to refuse medical treatment.

Doctors have a duty to ensure that patients in their care who refuse medical treatment are competent to do so. Doctors who comply with an incompetent patient's refusal of treatment risk harm to the patient and are breaching their duty of care. On the other hand, doctors who treat a competent patient against the patient's will violate his or her autonomy and commit a battery. The test of competence is a legal one, with the courts being the final arbiters in cases of doubt. Assessment of competence involves a three-step process of determining whether the patient (a) can comprehend and retain relevant information, (b) believes the information, and (c) can weigh the information in the balance and arrive at a choice. Asking patients a few simple questions can help doctors assess their competence.     

Physicians' evaluations of patients' decisions to refuse oncological treatment

OBJECTIVE: To gain insight into the standards of rationality that physicians use when evaluating patients' treatment refusals. DESIGN OF THE STUDY: Qualitative design with in depth interviews. PARTICIPANTS: The study sample included 30 patients with cancer and 16 physicians (oncologists and general practitioners). All patients had refused a recommended oncological treatment. RESULTS: Patients base their treatment refusals mainly on personal values and/or experience. Physicians mainly emphasise the medical perspective when evaluating patients' treatment refusals. From a medical perspective, a patient's treatment refusal based on personal values and experience is generally evaluated as irrational and difficult to accept, especially when it concerns a curative treatment. Physicians have a different attitude towards non-curative treatments and have less difficulty accepting a patient's refusal of these treatments. Thus, an important factor in the physician's evaluation of a treatment refusal is whether the treatment refused is curative or non-curative. CONCLUSION: Physicians mainly use goal oriented and patients mainly value oriented rationality, but in the case of non-curative treatment refusal, physicians give more emphasis to value oriented rationality. A consensus between the value oriented approaches of patient and physician may then emerge, leading to the patient's decision being understood and accepted by the physician. The physician's acceptance is crucial to his or her attitude towards the patient. It contributes to the patient's feeling free to decide, and being understood and respected, and thus to a better physician-patient relationship.     

The Gettier Problem in informed consent

The duty to procure informed consent (IC) from patients before any significant intervention is among the pillars of medical and research ethics. The provision by the doctor of relevant information about treatment and free decision-making by the patient are essential elements of IC. The paper presents cases of IC where the free decision about treatment is not causally related to the information provided, and claims that such cases pose a difficulty parallel to that presented by the Gettier Problem in epistemology. In analogy to the original problem with the concept of knowledge, these Gettier-type cases show an indeterminacy in the concept of IC: we either need to add some explicit additional condition of causal connection between information and consent, or else we should understand the concept in a new way-specifically, since the practice of autonomy necessarily involves some consideration of the relevant information, we must understand free consent in a way that no longer refers to patient autonomy.     

Patients who refuse treatment in medical hospitals

Treatment refusal in medical hospitals, despite the interest it has aroused among lawyers and ethicists, has been largely ignored by the medical profession. This study of the phenomenon in a number of medical and surgical settings has disclosed that refusal is a common occurrence. In this study, refusals were often precipitated by problems within the physician-patient relationship, although several interactive factors were usually involved. Physicians' responses to refusal tended to be undifferentiated with regard to the precipitants, depending more heavily on the medical urgency of the situation. Costs of refusal were measurable in terms of delay and increased expense when treatment was ultimately accepted and, less commonly, in terms of physical harm to the patient. These findings illustrate important strains in the modern physician-patient relationship and suggest that closer attention to factors underlying refusal may increase the rate of successful resolution.     

The cost of refusing treatment and equality of outcome.

Patients have a right to refuse medical treatment. But what should happen after a patient has refused recommended treatment? In many cases, patients receive alternative forms of treatment. These forms of care may be less cost-effective. Does respect for autonomy extend to providing these alternatives? How for does justice constrain autonomy? I begin by providing three arguments that such alternatives should not be offered to those who refuse treatment. I argue that the best argument which refusers can appeal to is based on the egalitarian principle of equality of outcome. However, this principle does not ultimately support a right to less cost-effective alternatives. I focus on Jehovah''s Witnesses refusing blood and requesting alternative treatments. However, the point applies to many patients who refuse cost-effective medical care.     

Is there a moral duty for doctors to trust patients?

In this paper I argue that it is morally important for doctors to trust patients. Doctors' trust of patients lays the foundation for medical relationships which support the exercise of patient autonomy, and which lead to an enriched understanding of patients' interests. Despite the moral and practical desirability of trust, distrust may occur for reasons relating to the nature of medicine, and the social and cultural context within which medical care is provided. Whilst it may not be possible to trust at will, the conscious adoption of a trusting stance is both possible and warranted as the burdens of misplaced trust fall more heavily upon patients than doctors.     

Futility and the ethics of resuscitation

Recent recommendations that physicians be allowed to withhold cardiopulmonary resuscitation, without patient consent, from patients for whom it would be futile have drawn objections that such unilateral judgments would undermine respect for patient autonomy. These objections assume that since futility determinations involve value judgments, patient input is always required. However, certain sorts of value judgments must be made unilaterally by physicians as part of reasonable medical practice. Moreover, the mixed messages inherent in requesting patient consent to withhold futile therapy serve to undermine rather than to enhance autonomous choice. Real patient interests can better be saved by a broad public dialogue around judgments of medical reasonableness and medical futility, rather than concern for the form but not the substance of patient autonomy.     

False belief and the refusal of medical treatment.

May a doctor treat a patient, despite that patient''s refusal, when in his professional opinion treatment is necessary? This is the dilemma which must from time to time confront most physicians. An examination of the validity of such a refusal is provided by the present authors who use the case history of a patient refusing treatment, for cancer as well as for a fractured hip, to evaluate the grounds for intervention in such circumstances. In such a situation the patient is said to have a ''false belief'' and it is the doctor''s duty to try to change that belief in the patient''s interest. The false belief is considered here in terms of the liberty principle, the patient''s mental competence and on what is called the ''harm principle'' (harm to other individuals or to society). Finally the concept of paternalism is examined. The authors conclude that the doctor must attempt to change a false belief, and if this fails he must examine the patient''s mental competence to make the decision to refuse treatment. But in the last analysis the doctor may be under an obligation to respect the patient''s refusal. Readers might like to look at (or read again) the papers on ''Liberty'' and ''Conscience'' published in this Journal under the heading Analysis.     

Consequences for patients of health care professionals' conscientious actions: the ban on abortions in South Australia.

The legitimacy of the refusal of South Australian nurses to care for second trimester abortion patients on grounds of conscience is examined as a test case for a theory of permissible limits on the autonomy of health care professionals. In cases of health care professional (HCP) conscientious refusal, it is argued that a balance be struck between the HCPs' claims to autonomous action and the consequences to them of having their autonomous action restricted, and the entitlement of patients to care and the consequences for them of being refused such care. Conscientious action that results in the disruption or termination of health care services, however, is always impermissible on two grounds. Firstly, because it is at this point that the action '... invades a patient's autonomy, puts a patient at serious risk ... [and] treats a patient unjustly' (1) Secondly, because the consequences of such refusals turn them into political acts--acts of civil disobedience. It is arguable that in order for acts of civil disobedience to be legitimate, certain obligations are required of the dissenter by the community. It is concluded that the actions of the South Australian nurses, which have over the last few years both terminated and disrupted second trimester services, are morally impermissible.     

An obstructed death and medical ethics -- a case conference revisited: commentary 2

The dilemma of whether or not a doctor should tell a patient dying of cancer the truth remains a difficult one, as the disagreement between the two previous writers shows. One favours giving priority to patient autonomy, the other feels the doctor's duty of beneficence should be the overriding principle governing such decisions. To this contributor it seems both approaches have something to offer. By being sensitive to what and how much the patient wishes to know and by learning from the insights provided by the study of medical ethics, doctors can learn how to make better moral decisions in this and in other areas. Both lying and truth-telling carry risks of harm to the patient. Learning to work with and balance these risks is part of clinical practice. So is minimising risks by clear thinking.     

Consent, competency and ECT: some critical suggestions

Should the `irrational'' refusal to consent to ECT of a depressed patient who knows he is thought to be ill, knows that his doctor believes ECT will help him and knows that he is being asked to decide, be respected or overridden? The author of the first paper, an American bioethicist argues that the refusal should be overridden in the interests of fostering the autonomy of the patient by overcoming the impediment to that autonomy which major depression represents. A philosopher and a psychiatrist respond and an editorial discusses the issues.     

Informed consent: what does it mean?

The editorial in the September 1982 issue of this journal and many articles before and since have addressed the problem of informed consent. Is it possible? Is it a useful concept? Is there anything new to be said about it? In this article the basic rationale of the rule (patient autonomy) is explained and the extent of the rule explored. Various exceptions have been offered by the law and an attempt is made to catalogue the chief of these. A number of specially vulnerable groups are then identified, the most important, and vexed, being children. How can informed consent be secured in the case of young patients? Finally, a few problems are mentioned in an attempt to get this subject back to reality. The appeal to the principle primum non nocere may be medical paternalism in disguise. Informed consent is the competing principle that reminds us of the primacy of human autonomy. A pointer is given to the future: even the use of sound recordings to explain medical procedures and to activate informed consent so that it may become a reality and not just a lawyer's myth, should be considered.     

Equal partners: doctors and patients explore the limits of autonomy

In recent decades medicine--like all social institutions--has fallen from public trust. Managed care has made third-party payers a partner in the physician-patient relationship. Advocate groups, some lawyers, and bioethicists have encouraged patients to demand a greater voice in medical decisions. Physicians and patients are forced to relate to each other in a narrower range, and more of the physician's actions are being dictated and standardized. Physicians are often seen as a threat to the patient's autonomy and believed to be too paternalistic, authoritarian, and too concerned with profit to be reliable partners. A review and synthesis of the literature supports the view that patients prefer to have decisional control over outcomes but leave technical decisions on how to achieve those outcomes to physicians. Good medical care is a process of having one's autonomy respected and knowing when to relinquish it. Promoting patient autonomy as an ultimate value in medicine rather than recognizing it as one value among others (such as caring, trust, and honesty) is an error. The task of medicine is not to banish paternalism, but to preserve kindness and respect for the patient as a person.     

Autonomy in medical ethics after O'Neill

Following the influential Gifford and Reith lectures by Onora O'Neill, this paper explores further the paradigm of individual autonomy which has been so dominant in bioethics until recently and concurs that it is an aberrant application and that conceptions of individual autonomy cannot provide a sufficient and convincing starting point for ethics within medical practice. We suggest that revision of the operational definition of patient autonomy is required for the twenty first century. We follow O'Neill in recommending a principled version of patient autonomy, which for us involves the provision of sufficient and understandable information and space for patients, who have the capacity to make a settled choice about medical interventions on themselves, to do so responsibly in a manner considerate to others. We test it against the patient-doctor relationship in which each fully respects the autonomy of the other based on an unspoken covenant and bilateral trust between the doctor and patient. Indeed we consider that the dominance of the individual autonomy paradigm harmed that relationship. Although it seems to eliminate any residue of medical paternalism we suggest that it has tended to replace it with an equally (or possibly even more) unacceptable bioethical paternalism. In addition it may, for example, lead some doctors to consider mistakenly that unthinking acquiescence to a requested intervention against their clinical judgement is honouring "patient autonomy" when it is, in fact, abrogation of their duty as doctors.     

Bioethics for clinicians: 1. Consent.

Patients are entitled to make decisions about their medical care and to be given relevant information on which to base such decisions. The physicians obligation to obtain the patient's consent to treatment is grounded in the ethical principles of patient autonomy and respect for persons and is affirmed by Canadian law and professional policy. A large body of research supports the view that the process of obtaining consent can improve patient satisfaction and compliance and, ultimately, health outcomes. An exception to the requirement to obtain consent is the emergency treatment of incapable persons, provided there is no reason to believe that the treatment would be contrary to the person's wishes if he or she were capable.     

A Study on Agent-Based Secure Scheme for Electronic Medical Record System

Patient records, including doctors’ diagnoses of diseases, trace of treatments and patients’ conditions, nursing actions, and examination results from allied health profession departments, are the most important medical records of patients in medical systems. With patient records, medical staff can instantly understand the entire medical information of a patient so that, according to the patient’s conditions, more accurate diagnoses and more appropriate in-depth treatments can be provided. Nevertheless, in such a modern society with booming information technologies, traditional paper-based patient records have faced a lot of problems, such as lack of uniform formats, low data mobility, slow data transfer, illegible handwritings, enormous and insufficient storage space, difficulty of conservation, being easily damaged, and low transferability. To improve such drawbacks, reduce medical costs, and advance medical quality, paper-based patient records are modified into electronic medical records and reformed into electronic patient records. However, since eletronic patient records used in various hospitals are diverse and different, in consideration of cost, it is rather difficult to establish a compatible and complete integrated electronic patient records system to unify patient records from heterogeneous systems in hospitals. Moreover, as the booming of the Internet, it is no longer necessary to build an integrated system. Instead, doctors can instantly look up patients’ complete information through the Internet access to electronic patient recoreds as well as avoid the above difficulties. Nonetheless, the major problem of accessing to electronic patient records cross-hospital systems exists in the security of transmitting and accessing to the records in case of unauthorized medical personnels intercepting or stealing the information. This study applies the Mobile Agent scheme to cope with the problem. Since a Mobile Agent is a program, which can move among hosts and automatically disperse arithmetic processes, and moves from one host to another in heterogeneous network systems with the characteristics of autonomy and mobility, decreasing network traffic, reducing transfer lag, encapsulating protocol, availability on heterogeneous platforms, fault-tolerance, high flexibility, and personalization. However, since a Mobile Agent contacts and exchanges information with other hosts or agents on the Internet for rapid exchange and access to medical information, the security is threatened. In order to solve the problem, this study proposes a key management scheme based on Lagrange interpolation formulas and hierarchical management structure to make Mobile Agents a more secure and efficient access control scheme for electronic patient record systems when applied to the access of patients’ personal electronic patient records cross hospitals. Meanwhile, with the comparison of security and efficacy analyses being the feasibility of validation scheme and the basis of better efficiency, the security of Mobile Agents in the process of operation can be guaranteed, key management efficacy can be advanced, and the security of the Mobile Agent system can be protected.     

Autonomy and negatively informed consent

The requirement of informed consent (IC) to medical treatments is almost invariably justified with appeal to patient autonomy. Indeed, it is common to assume that there is a conceptual link between the principle of respect for autonomy and the requirement of IC, as in the influential work of Beauchamp and Childress. In this paper I will argue that the possible relation between the norm of respecting (or promoting) patient autonomy and IC is much weaker than conventionally conceived. One consequence of this is that it is possible to exercise your autonomy without having the amount of and the kind of information that are assumed in the standard requirement of IC to medical treatments. In particular, I will argue that with a plausible conception of patient autonomy, the respect for and the promotion of patient autonomy are in certain circumstances better protected by giving patients the right to give their negatively informed consent to medical treatments.