This is a cross-post from my recent update at the Practical Ethics blog
There’s a story that’s often told about the evolution of the doctor-patient relationship. Here’s how it goes: back in the bad old days, doctors were paternalists. They knew what was best, and the job of the patient was simply to do as they were told and hopefully get better. Then, in part because of abuses of power, and in part because of cultural changes, a new model emerged. This model cast patients not as passive recipients of instruction, but as active, autonomous agents, put in charge of their own medical decisions. The doctor-patient relationship was remodelled, from a paternalistic relationship (doctor looks after patient’s health) to a service relationship (doctor does what patient wants, within limits).
That story is almost certainly too simple to be true. But even histories that aren’t wholly accurate can come to influence our culture and expectations. And the dominant assumption between both patients and medical professionals seems to be that our relationship will be cast on what is sometimes called the “informative model” (Emmanuel and Emmanuel, 1992), where the medical role is simply to provide the patient with empirical information, such as information about likely risks and outcomes.
That model has itself been subject to challenge. For instance, we might think that doctors should be willing to offer advice not only about facts, but also about values. Emmanuel and Emmanuel (1992) suggest two mid-points between paternalism and the informative model. According to the ‘interpretive’ model, the doctor helps the patient to work out the patient’s own values; on the deliberative model, of which liberal rationalism is an instance, the doctor aims to persuade the patient to adopt her favoured course of action, though the decision is ultimately left up to the patient.
All of these models, however, leave the ultimate decision up to the patient. One reason for this might be the assumption that any model where decisions are not made by the patient must be a paternalist one. After all, either the patient is making decisions, or someone else is. And if someone else is making decisions for me, isn’t that worryingly paternalistic?
But this line of thought is subject to an understandable confusion between what we might call sovereignty on the one hand and, on the other, decision-making authority. Consider an issue that has been an undercurrent in British politics lately, the relationship between representatives in a democracy like the UK’s, and the electorate whom they represent. One model (by no means uncontroversial) sees the right to make decisions as essentially loaned to MPs by their voters. Nonetheless, ultimate sovereignty lies with the people.
Having someone else make decisions for you, even about very important issues, is consistent with your ultimately having the authority, and the power, to take back control (sorry) over decision-making. On this model, the decision-maker (doctor or parliamentarian) becomes the appointed fiduciary of the sovereign individual or group (patient or public).
There is one important difference between parliamentary democracy and my proposal for an appointed fiduciary model in medicine, though. In the UK, even if the people theoretically have control, it isn’t practically possible for us to take it back in any substantive way without undermining our system of government. The people can choose who governs them, but they can’t choose not to be governed.
In contrast, my suggestion is that an appointed fiduciary model could be the exception rather than the norm in medicine. Placing a doctor in charge of your medical decision-making would be present as an option, not imposed on anyone who didn’t want it. This appointment could be rescinded at any time. And having appointed a doctor as a fiduciary for one medical decision would not mean that they automatically had decision-making authority over other medical decisions, let alone decisions outside the medical sphere.
Having control over decisions that affect your life is sometimes presented, not least in the Just So story we began with, as an unqualified good. It surely is often a good thing to be in control of your life. But control, and the responsibility it entails, can also be a burden. Being responsible opens you up to blame, to making mistakes of judgement that have serious costs, and perhaps even to substantive penalties if your poor choices affect others. That can be stressful and emotionally draining for anyone. Add to that the stresses that come with serious illness, and decision-making authority might turn out to be too much. To take away someone’s right to choose when they want to do so is wrong. But it is also wrong to insist that someone choose when that is too much for them.
To be clear, the kind of patient I’m thinking of is not the individual who lacks mental capacity in a legal sense. Mental capacity is a threshold concept (you either have it with respect to a particular decision, or you don’t), and the principle of assumed capacity is an important one. Rather, I am thinking of patients who undeniably have capacity, but who are at a point where decision-making is extremely burdensome for them.
No doubt, there are worries that might attach to this proposal, as with any proposal that involves transferring authority away from the individual who is affected by the relevant decisions. Although patients would retain ultimate authority, vulnerable patients may be liable to manipulation and abuse. The decision to transfer authority would need to be subject to oversight beyond the doctor involved.
Still, I think this model is worth considering as one option among several. We must not fall into the trap of assuming that one model will suit everyone equally well. Nor can a fear of misapplication, which could be minimised, distract from the potential to benefit patients.
Vernon Bognador (2016) ‘After the referendum, the people, not parliament, are sovereign’ Financial Times December 9th 2016
Ezekiel J. Emmanuel and Linda L. Emmanuel (1992) ‘Four Models of the Physician-Patient Relationship’ The Journal of the American Medical Association267(16): 2221-2226
Laurence B. McCullough (2011) ‘Was Bioethics Founded on Historical and Conceptual Mistakes About Medical Paternalism?’ Bioethics 25(2): 66-74
Julian Savulescu and Richard W Momeyer (1997) ‘Should Informed Consent Be Based on Rational Beliefs?’ Journal of Medical Ethics 23: 282-288