The report of the President’s Commission on health care decisions and informed consent was published in 1982, the same year in which Childress’ Who should decide, paternalism in health care was published. A year later Sartorius published a collection of essays on paternalism. Faden and Beauchamp’s History and theory of informed consent was published in 1986, the same year as VanDeVeer’s Paternalistic intervention and Feinberg’s Harm to SelfGoogle Scholar
As we have seen, this is one of the arguments used to explain the value of the right to autonomy in generalGoogle Scholar
It remains necessary, however, as a separate condition for autonomous actions in general.Google Scholar
For an analysis of the concept known as the ‘care of a good caregiver’, see van der Burg et al. 1994.Google Scholar
It seems as if the legal climate in the United States has contributed substantially to the tendency of physicians there to exhaustively list all possible risks of a procedure for the purpose of avoiding litigation, instead of for the purpose of informing their patients in a meaningful way.Google Scholar
Theoretically, an appeal to reason can and must be distinguished from an appeal to emotions, although this can prove difficult in practical situations.Google Scholar
In this context, it is interesting to observe that the classic role of the patient seems to be slowly shifting. A ‘virtuous’ patient used to be obedient and submissive; lately, however, the patient is expected to be self-determined and self-assured. A patient that was once labelled non-compliant might now be called autonomous (cf. Donovan & Blake 1992, Holm 1993).Google Scholar
In the third edition of their book, Beauchamp and Childress still treat informed consent and shared decision-making as two distinct entities. In the fourth edition they state that “by viewing informed consent as a temporal process, we can avoid the model of mutual decision-making and the model of a single event” (1994, 143)Google Scholar
If this is the way proponents interpret the ‘outcome* standard, their test for competence (determined by good reasoning or rational thinking) can be compared with establishing a person’s competence to drive a car by looking to see whether he will wind up in the right place.Google Scholar
Risk must be understood as including the chance of harm occurring, the seriousness of this harm and the reversibility or irreversibility of this harm.Google Scholar
I will not explore the issue of decision-making for incompetent patients in great detail, because it would take me too far from my central subject, autonomy, and because it is such a complex issue that it deserves separate study.Google Scholar
Studies indicate that (family member) surrogates correctly predict patients’ treatment preferences in 60–70% of cases (Hare, Pratt & Nelson 1992; Mattimore et al. 1997). According to some studies, they do not even do any better than random chance would (Suhl et al. 1994). Physicians do worse than family members (Seckler et al. 1991, Ouslander, Tymchuk & Rahbar 1989). Though family members do indeed appear to be most knowledgeable about the patient’s preferences, they are nevertheless mistaken in a significant number of cases.Google Scholar
One possible way to ameliorate this problem is by drawing up a ‘values history’ in which, in addition to the articulation of the patient’s advance directives, his values are explicitly identified and explained (Doukas & McCullough 1991).Google Scholar
An interesting and important discussion relevant for the validity of advance directives is that of (the continuity of) personal identity, for instance in the process of becoming demented. See Rich 1997, Newton 1999.Google Scholar
The autonomy of the patient has triumphed, in legal terms at least. Doctors and health care personnel are legally required to disclose information about treatments to patients, and patients have the legal right to say “yes” or “no” to any treatment. But how practical is informed consent? The legal implementation of informed consent seems to be mostly a matter of filling out extra paperwork. So that seems practical enough. On the other hand, actually practicing the moral values behind informed consent is much more difficult.
We value the freedom to choose on so many levels. We have a right to choose as consumers, as voters, as citizens and as competent people in general – so then why not as patients? Of course patients should have a right to consider multiple opinions, assess alternative treatments, and then make a choice on their own. But in reality, a patient’s autonomy is highly limited. A lot of the limiting factors are neither inconsequential nor easily avoidable. In Barriers to informed consent, Lidz et al. outline how patient trust, physician expertise, acute illnesses, and complex medical systems make true informed consent difficult to achieve.
Are we morally obligated to try to overcome these obstacles? Or can they be viewed as the practical, real-world limits to our abstract ideals of patient autonomy? This question isn’t really about obstacles like access to healthcare or the complexity of the healthcare system. There’s no question that we should be trying to increase access to care and streamlining the system. The interesting obstacles are those that deal with the doctor-patient relationship. Should we be trying to change this relationship on a moral basis?
Let’s consider patient trust and physician expertise – both important obstacles to informed consent. Patients often don’t really want to make a decision based on what they know about their medical condition. They instead trust the physician enough to make such decisions for them. I see this as a clear act of autonomy. It’s a very rational choice to trust a trained professional’s informed decision over one’s own, likely less-informed decision. Ah but that’s where physicians have to make sure patients are fully and objectively informed, right? Well even if a physician explains the relevant diagnosis and treatment to the patient in an easily comprehendible way, most patients will not know the essential mechanisms and pathology behind the physician’s decision. They’ll instead be given a simplified picture of a complex system – one that is inevitably going to be biased towards the physician’s decision anyway. We can’t blame physicians for such simplified, biased explanations any more than we can blame scientists for being biased towards one particular theory or paradigm. In the words of Galileo, “it is not within the power of the practitioners of demonstrative sciences to change opinion at will,” (p 125). They are compelled to believe what they believe by the power of reason.
All of this is not to say that the “informed” part of informed consent is irrelevant just because it is likely to have a bias. But maybe the information is, for practical considerations, less important than what we call patient trust – a form of rational consent.
Galilei, Galileo, and Maurice A. Finocchiaro. The Essential Galileo. Indianapolis, IN: Hackett Pub., 2008. Print.
Charles W. Lidz, Ph.D., Alan Meisel, J.D., Marian Osterweis, Ph.D., Janice L. Holden, R.N., John H. Marx, Ph.D. and Mark R. Munetz, M.D. “Barriers to Informed Consent.” Arguing About Bioethics. Ed. Stephen Holland. London: Routledge, 2012. 93-104. Print.