Autonomy and Trust in Bioethics
Authors: Douglas Black
Journal: Journal of the Royal Society of Medicine (2002)

The autonomy of patients is commonly treated as the predominant principle in current discussion of medical ethics—the other three principles in the Beauchamp—Childress formulation being benevolence, non-maleficence, and ‘justice’. In her Gifford Lectures, Onora O'Neill explores the meaning of autonomy, and the bearing of the present emphasis on autonomy on the mutual trust that should inform the relation between patients and health professionals. A clear and interesting distinction is made between autonomy as conceived by John Stuart Mill (in which the bounds of choice are stretched to include what might be regarded as caprice); and by Immanuel Kant (for whom autonomy must be informed and guided by ‘practical reason’, i.e. be a ‘principled autonomy’). A clear preference is expressed for the Kantian view, which implies a sense of obligation, thus moving the balance between rights and duties in the direction of duties (unpopular but in my view necessary). Possibly the clearest expression of misgiving about overemphasis on individual autonomy comes on p.73. The supposed triumph of individual autonomy over other principles in bioethics is, I conclude, an unsustainable illusion.

Chapter 6, entitled ‘The quest for trustworthiness’, is perhaps the most important and also the most controversial section of the book. It discusses how an ethic grounded on principled autonomy may be made the basis of fostering trustworthiness. Coercion and deception are generally inadmissible; and there may be inherent difficulty in moving ‘from indeterminate principles to determinate structures and acts’. So recourse has been had to statutory monitoring and regulatory agencies. There are, however, limits to the effectiveness of audit and of ‘openness’ in promoting trust. In audit, performance indicators may be chosen for measurability, not for relevance. Institutional loyalty and professional morale may be damaged by external audit—‘those who find their clocks watched begin to watch their clocks’—and at the limit, the auditors may themselves require audit. Both audit and openness generate ‘prodigious documentation’ (which presumably must be written or entered, and possibly even read). And, at the end of the road, there remains the possibility that trustworthiness, established by whatever means, may yet fail to have its reward in public trust. ‘The UK regulates the use of animals in laboratories more tightly, to higher standards of animal welfare, and is more open about the work done than any other jurisdiction. Yet in this case accountability and openness have seemingly only increased public distrust in scientists and in the pharmaceutical industry’.

Public attention, led by the media and on occasion by the Government, is largely directed to instances of justified mistrust; but there is also the ‘Cassandra problem’ of misplaced mistrust (p. 141). This leads to ‘unnecessary anxiety for the needlessly mistrusting’: and to ‘grief and difficulties (for the needlessly mistrusted)’.

Where and how to place trust is a vital question, very difficult in view of the complexity and importance of many of the issues. ‘In deciding how to place trust well, we can be defeated by lack of evidence, by lack of time, or by lack of expertise to assess evidence’. Although informed consent is ‘a tough safeguard by which individuals can protect themselves against coercion and deception’, it is not by itself a sufficient guarantee that trust will be properly placed. ‘Full’ information is a function of the ‘informer’, who may not know all the relevancies and risks; so, ultimately a patient consents to a description of a procedure that may neither accurately reflect what is to be done nor address undisclosed fears. A ‘consent form’ plumbs greater depths of inflexibility.

Accepting that trustworthiness does not necessarily ensure trust, and assuming that well-placed trust is a ‘good’ in all manner of relationships, how is proper public trust to be enhanced? The suggested answer is that somehow people must be given the appropriate information on which they can form their own judgment.... Both print and broadcast media fall well short of this standard. Good and fair writing and broadcasting on medicine is not absent: but it is swamped by material which is driven more by circulation and ratings than by concern for truth or informed debate, and which commonly fails to disclose either the source and reliability of the information or any covert commercial inspiration. The hope is that encouragement of ‘acceptable processes of reporting’, if necessary by regulation, would neither infringe the freedom of the press nor constitute formal censorship. This suggestion satisfies at least the principle of non-maleficence.

It is the mark of a truly good book that it stimulates criticism as well as agreement and praise. As might be expected, my reservations are pragmatic, not philosophic. The first of them applies to the great mass of discourse on medical ethics as much as it does to this book. Teamwork and technology are credited with utility, but debited as diminishing the autonomy of the patient. Such criticism is appropriate only to secondary and tertiary care: the great majority of meetings between doctors or nurses and patients take place one-to-one in primary care. Moreover, good teamwork and technology are the very essence of the care of critical illness. Cost-free, risk-free benefit is not to be had; nevertheless, failure to reassure a sentient patient is a shortcoming in any context.

If I may match what I see as overemphasis on the evils of high-tech medicine with an underemphasis, again in ethical writing generally, very little is said on the needs of doctors, nurses and other professionals for sympathy and support. They too must have some degree of autonomy, even though at times this must be sacrificed in the interests of patients.

This book is a notable contribution to understanding of the most important task facing those responsible for the NHS—to maintain trust where it exists (as it does in most cases) or to restore trust where it has lapsed. Each of us is likely to interpret the message in our own way, but for me it reinforces a strong preference for the long haul of recruiting and training more and better health professionals, rather than the quick fix of setting up yet another regulatory body in ostensible response to concerns which may have been fostered by pressure groups and exaggerated and exploited by the media.