(Disclaimer: these are merely my notes on the Baroness’s lecture, and therefore not necessarily an accurate summary of what was said. This version in the J Med Ethics of a symposium on the limits of informed consent may be more useful >>> click here)
The three traditional concerns of medical ethics described by a medic as referrals, confidentiality & billing! Enormous changes in medicine (technology, budgets, expectations) led to a rejection of self-regulation and calls for accountability. Important expression of the shift: David Rothman’s Strangers at the Bedside [link to review in Medical History]. A new era of thinking on ethics emerging in the 70s/80s saw a rejection of paternalism as a model for medical practice. The trap of professional capture: whereby the needs of the regulated inevitably win out over those of the public in any system developed by the professionals themselves.
Public accountability has taken over as a principle determining obligations (especially second order ones); an auditing process such that all stakeholders can be satisfied. However, problems arise in relation to patient consent: a almost “mindless” pursuit of anti-paternalism ideals. Patient consent is the goal of the consent procedures, but there are limitations: to protect against coercion, deception, manipulation etc.
The “voluntary consent” of the Nuremberg Code [link to summary of Code] seeks to enable a “free power of choice” based on an “understanding and enlightened” decision. In the Declaration of Helsinki [link to document] the emphasis on “inform” and “information” shows the search for a way to make consent more and more rigorous and exacting. The processes have been become more formal, complete and specific: but pure consent not possible because there is always an element of tacit understanding assumed without proof. It is actually uninformed consent we have. Judgement is always called for. The pursuit of signatures on paper does not demonstrate understanding; something unethical about it, in fact: “Have you consented her?” is the euphemism.
Patient autonomy as aim of consent procedures. Over-ambitious model. Doctors less accountable.
Indirect ways of replacing patient consent? Trust? Out of fashion & lampooned (e.g. The Blizzards Trust me, I’m a doctor song [link here >>]. The idea of a layer of professional respectability being used to hide unethical behaviour. Form filling? Not proving effective judging by surveys of public perceptions. Regulatory accountability is process heavy – groan-inducing, bureaucratic, eroding of core responsibilities (1st order obligations?). Managerial accountability based on target setting and scores is likewise at odds with itself in balancing processes with work (Book of Exodus reference: “Go therefore now, and work; for there shall no straw be given you, yet shall ye deliver the tale of bricks.”).
No road back to self regulation (and yet …) Try to reduce shortcomings of upward regulatory processes; it is bad processes and target setting that may be the problem > establish more meaningful ones?
The misconception of the (unilateral?) idea of “winning someone’s trust”, when trust is placed or refused BY the individual.
Formal systems of accountability can be incomprehensible to the public, leading to public forms reviews, rankings, league tables – something to be learned from the consumer movement. But they are problematic: reliability, pertinence?
Direct, face-to-face communication between decision maker and patient is expensive but is probably what patients ultimately want. Physical presence helps expose evasion etc although is not helpful when it comes to professional competence (where self-regulation may well have a valid role to play).
Communication can only facilitate “sufficient” trust, not complete. Trust compared to belief, hope etc. No proof of trust possible. (A case of infinite regress.)
“Deference is not always dumb”.
(Apologies for gaps & misinterpretations. Corrections & elaborations welcome.)
NOTE: Professor O’Neill was delivering the inaugural Swan Lecture in the Paccar Theatre, Science Gallery, Trinity College Dublin; and awarding Swan Medals to Laura Gleeson for her paper “Are medical students passive by-standers in medical ethics?” and Elliott Woodward for his paper “Is paternalism always bad in medicine?” Professor Davis Coakley gave a brief sketch of Jeremy Swan’s life [link to eulogy from 2005], Professor Dermot Kelleher oversaw the proceedings, and Professor Sean O’Briain led the discussion afterwards.