Written by Ben Davies
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.
References
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 Association 267(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
It’e fascinating that the conception of a doctor called “paternalist” here is more or less what I’ve long considered the most important central feature of the concept profession.
I don’t pay a doctor, lawyer or professor to do for me what I’ve already decided I want, but rather to take the lead in directing certain aspects of my well-being, aspects which I’m not in a position to understand nearly as well. The same would be true of clergy if I were religious. Slightly further out on the radial category, it certainly applies somewhat to accountants, architects, personal trainers…
Is someone selling me clothing a professional? I’d say most of them surely aren’t, since they pretty much show me things I’ve broadly requested, and then I choose. The few that may qualify are those whose judgment I would trust despite conflict with my own estimation. Tuxedo styles for my wedding, perhaps.
Yet even as I’m considering which sort of stylist or craftsperson I might defer to as I would a medical doctor, I’m regularly made aware that many of my contemporaries, employing the analogy in reverse perhaps, regularly treat doctors and lawyers as if they were butchers tasked with delivering precisely the cut you asked for, or “sales associates” in a strip mall.
By my lights, this isn’t “the medical profession having undergone change” so much as “the concept of a professional person having been rejected”.
Thanks for your comment. I agree that the ‘sales’ model of medicine is to be avoided, and that medical professionals aren’t simply there to do what we want. Still, I’m not sure it’s quite right to equate ‘paternalist’ with ‘professional’.
Two distinctions may be helpful, both of which I try to suggest in the original post. The first is between offering information and offering advice. Offering advice involves a person’s opinion in a way that information doesn’t. But it needn’t be paternalistic. For instance, an architect may advise me that the specifications I’ve drawn up for my house are against the law, or will likely collapse as soon as it is put up.
The second distinction is, as I suggest in the original piece, between who makes the decisions and who has ultimate sovereignty over decisions. To appoint someone as a decision-maker over a particular area of one’s life is, I think, the essential element of a professional relationship. But again, I’m not convinced that it’s paternalistic. The doctor is still, ultimately, doing what they have been instructed/requested to do, but with rather more leeway to use their professional expertise. On the other hand, if we say that doctors should have ultimate sovereignty over (some) medical decisions, that seems to me to be more obviously paternalistic, in the traditional sense.
So, saying that the professional doctor should ‘take the lead in directing certain aspects of my well-being’ could mean any of several things, not all of which are obviously paternalistic. It could mean that they point me in a certain direction (advice), that they make the decisions with my ultimate consent (the appointed fiduciary), or that they take over completely in the decision-making (paternalism).
The doctor-patient interaction needs to be understood with reference to roles and boundaries. The doctor is the credentialed expert, and has the responsibility of determining the medically and ethically appropriate options, based on clinical findings and medical science. The patient with capacity can accept or decline indicated options, based on their personal values. Options often include a range of possibilities, and in some cases rank-ordered. But there are some treatments that are contraindicated, and should not be offered, even if patient or their surrogate requests or demands them. This framework respects autonomy, but also other relevant principles, beneficence, nonmaleficence, and justice. It recognizes that as part of the social contract having licensed, regulated professionals is necessary. The patient has the option of going elsewhere, to another community or country, if need be, since there are, for better or worse, differing standards of care, often based on financial concerns.
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