Autonomy, Informed Consent,
and Refusal of Treatment
The notion of informed consent is a recent one. Prior to the 1950’s, there was no firm ground in which a commitment to informed consent could be grounded. It is important that we work to understand exactly what it means to make an informed decision, so that we can be certain that our patients are able to act autonomously.
Canterbury v. Spence
Informed Consent
The first and most influential decision on the issue. The court recognizes that, given the unequal nature of the medical professional and the patient, it is essential that the doctor disclose the given risks of a procedure.
What is legally required?
· Certainly not full disclosure. It seems unreasonable to require that every risk be fully explained. What would full disclosure really mean or require?
· We need more than simply community standards that “good medical practice” requires. The duty to disclose arises from phenomena apart from medical custom and practice.
· Instead, the duty to reveal arises out of the patient’s right to self-decision, or, as we have been saying, the patient’s autonomy. The patient has a right to any information that is materially relevant to that patient’s making an informed decision. Any risks that would potentially affect the decision must be revealed.
How do we decide what is material to making an informed decision? The liability for that is to be determined by reasonable foresight, not hindsight: “a risk is thus material when a reasonable person, in what the physician knows or should know to be the patient’s position, would be likely to attach significance to the risk or cluster of risks in deciding whether or not to forego the proposed therapy” (73). Continue in the next paragraph.
Some risks are inherent and do not need disclosure—e.g., infection, issues that the average person would know, hazards that the patient is already aware of, or risks that have no materiality to the patient’s decision on therapy.
Exceptions: 1) the patient is unconscious (then consult a relative when possible) 2) disclosure would subvert autonomy, though this must not be used as an excuse for paternalism.
Physicians and Patients: A History of Silence
Jay Katz
First, consider the opening paragraph: p. 74. It has been the long tradition in medicine that patients are “only in need of caring custody.” There has been the assumption that relying on the patient’s autonomy to make a decision was inimical to good medical care. Challenges have recently arisen; Anglo-American law has had a long tradition of preferring liberty over custody, but in this case, that has been a problem.
Katz claims:
· that the courts have not appreciated how deeply the tradition of silence is rooted in medical practice, and that their appeals to self-determination were radically foreign to the standards of medical practice.
· that it was this fact that contributed to the physician’s construing these rulings as being more far-reaching than the courts intended them to be.
· medical silence had been almost a necessity, especially during the time that medical practices were less than scientific. Our medical knowledge was seriously inadequate, and it was often difficult to distinguish between therapeutic effectiveness of medical interventions and benefits that should have been ascribed to other causes.
· So the courts have made impassioned pleas for more patient self-determination while at the same time undercutting those pleas by giving physicians considerable latitude to practice according to their own lights, telling them to “treat each patient with the utmost care.” The outcome has NOT been one that furthers patient liberty in making decisions about his/her own medical care.
Problems with the Canterbury ruling:
· results in MUCH wiggle room for the medical practitioner. The case says: “When medical judgment enters the picture and for that reason the special standard controls, prevailing medical practice must be given its just due” (76). What is “just due?”
· the difference between the objective standard and the subjective standard, and the short shrift given the latter.
· What does a patient need to know in order to make a decision, and what does a medical practitioner need to know in order to fully inform the patient? How can the doctor know exactly what is material to that patient?
Katz argues that informed consent and shared decision making are synonymous. He further argues that the current state of case law and current medical practices are not fulfilling the ideals of informed consent. His assessment: page 77.
The Concept of Informed Consent
Faden and Beauchamp
Faden and Beauchamp offer an alternative analysis of the whole debate, one that seems a bit more sophisticated than Katz. They begin by distinguishing between two senses of informed consent, sense1 and sense2.
Sense1: An informed consent is an autonomous action by a subject or patient that authorizes a professional either to involve the subject in research or to initiate a medical plan for the patient (or both).
More technically:
An informed consent in sense1 is given if a patient or subject with:
1) substantial understanding and
2) in substantial absence of control by others
3) intentionally
4) authorizes a professional
to do intervention I. All substantially autonomous acts fulfill 1-3, but such acts may not fulfill 4 if indeed the patient refuses such authorization. In that case, we have not informed consent, but informed refusal.
Thus:
· Katz’s equating of informed consent with shared decision making is a mistake. While indeed such a process may represent the medical ideal, it doesn’t exhaust the notion of autonomy.
· While the patient and the doctor may well reach a treatment decision in a shared fashion, it needs not in order to fulfill sense1 of informed consent. I may well not want to have to think about my treatment, so I may willingly and consciously put those decisions in the hands of the professionals. I can autonomously come to you and say: “I don’t want to have to think about all of this. I trust you implicitly, do what you think is best.” That would be an autonomous decision, and it would fulfill sense1.
· In other words, I can give informed consent without engaging the process of shared decision making. I can authorize the other to make decisions for me.
Sense2 informed consent is procedural. It is effective consent. It is policy oriented and is obtained by following a particular procedure that is put in place. It does not refer to autonomy, but neither does it rule it out. Note that I can have informed consent in sense1 without having it in sense2. Note that sense2 may well require disclosure of risks, while sense1 does not require it.
We should note that informed consent in sense1 need not conform to sense2, and that consent in sense2 need not conform to sense1. So, what do we have? What do we want?