How do doctors make decisions about information disclosure?: A moral diagnosis

Abstract

Alongside diagnosis and treatment, information disclosure is a fundamental legal duty owed by the doctor to the patient during the medical relationship. The duty is based on a longstanding moral responsibility to make decisions in the best therapeutic interests of the patient; by providing them information before, during, and after treatment. Failure to ensure adequate information disclosure is not in the patient’s best interests; as it fails to respect the dignity of patients to be informed and denies them the opportunity to make autonomous choices; as the basis of their treatment decisions. Failure to disclose essential information may ultimately lead to patient harm. These failures have been only too well evidenced in several high-profile scandals which have shaken trust in the moral and technical expertise of the medical profession and have led to political and academic calls for stronger ethical and legal regulation, including in relation to medical decision-making about information disclosure.

Academic lawyers and bioethicists have long argued that the sociological nature of the Bolam standard has facilitated a culture of deference, within the courts, towards medical paternalism. Since the turn of the century the academic zeitgeist has very much focused on debating the form and structure of normative rules and ethical standards for decision-making around information disclosure. Normativity has been characterised as the solution to future unethical decision-making. The normative rules and standards proposed have prioritised reducing medical discretion, by repurposing information disclosure towards facilitating models of substantive autonomous choice, and in doing so recasting the doctor as a service provider, within a consumer-type medical relationship. This has manifested in the law of negligence through the creation of various patient rights (and corresponding duties), to provide information disclosure to ensure an informed consent to treatment. However, the emphasis on facilitating rights and patient autonomy has often been done without robust empirical reflection, on the impact, rules, and standards of information disclosure on medical decision-making in practice. As such, these rules have failed to alter practices towards the envisaged ethical optimum. This thesis aims to fill that analytical gap by examining the empirical data; to explain how doctors made, and continue to make, medical decisions (from 1957 to present) about information disclosure and how the various ethical models of the medical relationship, contained within ethical and legal rules, have manifested in practice.

The thesis argues that the lack of empiricism has caused lawyers and ethicists to ignore the axiomatic internal moral norms and processes which have guided and structured medical decision-making within the therapeutic medical relationship, since time immemorial. These moral norms operate in medical decision-making through a process of circumstantial-moral reflection - which allowed doctors to facilitate patient information needs by combining learned knowledge, moral norms and patient circumstances, to come to a synoptic decision about materiality and communication, with the teleological aim of acting in the patient’s best interests. Legal and ethical normativity has had the effect of restricting the tailored approach to decision-making, by requiring the inclusion of extraneous facts, and that artificial weight be placed on values and principles (such as autonomy), which may be irrelevant to the actual patient. As ethical guidance has become more substantive, fear of litigation has created a formulism and rigidity in decision-making about disclosure: a process termed demoralisation. The philosophical basis of the rules has also tended to conflate the teleological ends of different types of medical relationships within the law and ethics. This has sometimes confused doctors as to the purpose and process of information disclosure, placing values and principles in conflict with the underlying moral norms of the medical profession. Models of autonomy have also been conflated, within standards of care and ethical rules; requiring doctors to utilise conflicting methods of decision-making to identify material information to ensure an informed consent. The confusion and conflict as to the purpose and process of disclosure has led to a form of moral fracture within the medical profession.

The lack of certainty about the ethical underpinning of rules after Montgomery v Lanarkshire Health Board [2015] UKSC 11, has now created uncertainty about the appropriate legal interpretation of the standard of care. This uncertainty has, in turn, led to a process of blinkered moralism: where the judiciary arbitrarily pick and choose the characteristics, values and criteria necessary to ensure an informed consent, when deciding liability. The unknowability of the correct form of decision-making, coupled with the fear of liability, has encouraged doctors to adopt practices of exhaustive disclosure. Exhaustive disclosure leads to patients being bombarded with information and requiring a mandatory autonomous choice. This type of defensive practice fails to either provide patients with the information they need (denying them an informed choice) or respect their choices about their preferred role within the medical relationship (causing them a dignitary harm). The thesis concludes by suggesting that the remedy to defensive practices is, first, a recognition of the essential moral and circumstantial nature of decision-making and, second, a return to a sociological standard of judicial evaluation - which examines the internal logic of a decision, and whether the decision meets the societal standards expected of the medical profession. This thesis therefore suggests the adoption of a revised form of the Bolam standard (Bolam 2.0). This standard would avoid the problems of normativity, facilitate the moral method of medical decision-making, and allow doctors to make decisions which are conducive to the therapeutic information needs of the actual patient.

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ORCID for Jacob Eisler: orcid.org/0000-0003-4422-5255

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