Wills Eye Hospital, Philadelphia, Pennsylvania, United States (Spring 2010)
Before initiating an action that may harm a patient, it is customary to obtain informed consent, with the generally accepted purpose of respecting the patient’s autonomy and protecting the person initiating the action: “Obtaining patients’ consent … demonstrates respect for patient autonomy and should help prevent legal action against health professionals.”1-6 An additional and important reason for obtaining informed consent is to help patients preserve or restore their health. Yet discussions regarding “informed consent” often miss the point that the patient himself must perform an essential role in determining his health, that whatever interferes with his ability to be responsible for his own health impedes his journey toward health, and that requiring consent may create a tone that diminishes the patient’s trust in his physician.
Many studies have shown that involving patients in their own care leads to better outcomes.7-21 Physicians, through their actions, may further the patient’s well-being by giving advice, entering into a dialogue, or transferring their enthusiasm for life. Administrative procedures, however, such as obtaining “informed consent,” may contribute to poorer health, at least in the manner they are usually presented.
Take the example of a patient who has trouble reading and thinks he needs new glasses. The doctor finds advanced cataracts and explains the benefits and risks of surgery, emphasizing that complications are rare and far outweighed by its benefits. The doctor then asks the patient for his consent to proceed with cataract extraction in conjunction with implantation of an intraocular lens. The patient acquiesces or demurs, troubled in a way because he had only wanted to improve his reading ability. Having a cataract extraction may not be at all what he expected or wanted. At this point some patients will simply comply with the doctor’s advice. Others may hesitate, wondering if their eyesight is really bad enough to risk the operation. To ask the patient to “consent” to a cataract extraction places the initiation of the healing process squarely in the physician’s hands; it is the physician’s idea and the physician will “do” the job. This unequal power relationship is exacerbated by the word “consent.”
In a somewhat different case, a highly knowledgeable patient has a uveitis and already knows from her Internet searches that the treatment is cortisone. The doctor tells her she should also be tested for syphilis, sarcoidosis, and several other diseases that can cause uveitis. After further discussion, the patient “consents” to use the cortisone eye drops but “refuses” to have the tests for syphilis and the other diseases. Here, the patient is highly knowledgeable about her eye condition, but is asked to do something she does not wish to do – to be tested for “frightening” diseases. She resists the doctor’s advice, and he wisely obtains an informed consent and informed refusal. Should her uveitis be caused by syphilis and should the doctor miss this diagnosis because appropriate tests were not done, he would be at risk for being held negligent. The doctor also wants the record to reflect that the patient was informed about the side effects of the cortisone treatment — cataracts and glaucoma.
In the first case, the patient was surprised to learn he needed surgery. In the second case, the patient has come to the doctor pumped with information, but still looks to the doctor as a powerful authority to whom she will either accede or resist. There is no sense of a partnership in either case. In both cases, the doctor’s words lead to consent or to refusal. One of the reasons the second patient did not follow the doctor’s advice is that the doctor presented himself as an authority figure and not as a compassionate caregiver. He came across as a professional dispensing health advice rather than a compassionate expert presenting the facts in an attempt to help a staunchly independent person make up her own mind in an empowering way.
Howard Brody, MD, in his book, The Healer’s Power, cogently discusses this inevitable inequality between physician and patient, through what he calls the “conversation model of informed consent,”19 a matter also discussed in detail by Stephen Wear.20 Even if the doctor’s request or proposal (in this circumstance, to proceed with a cataract extraction or treatment for uveitis) is welcome in that it suggests a way to achieve the patient’s goal of getting better, an element of concern is evoked in the consenter’s mind, simply because the solution has been proposed by somebody else. To the patient, this “somebody else” inevitably has some conflict of interest even though he or she presumably has the patient’s interests in mind; this presumption, however, is not a demonstrated certainty.
Consent implies a relationship based on power. While there is a difference in the power between patients and health professionals, it is not solely the professionals who are in possession of all the power. Health professionals are presumably more powerful because they know more about the pathophysiology of disease and the methods of treatment, but the patient is more powerful in that he has the option of acting on the advice of the professionals. Ideally the attitudes and actions of health professionals should shift the power to their patients. Patients who “consent” yield some power and control to the professionals, whereas patients who “choose” retain their power. No matter how beneficently professionals intend their suggestions to be or how amicably patients acquiesce to their advice, when the word “consent” is used, the implication remains that professionals are operating from a higher position.
Toward a paradigm of “informed choice”
“Choice,” unlike “consent” or “refusal,” is not inextricably linked with another person’s proposal.22 A waiter describing a menu to a diner may recommend the beef and mutton entrees; he may even add that he prefers the beef. The diner then considers the waiter’s remarks and makes a choice, perhaps to have the beef. We do not say that the diner has consented to have the beef. Some waiters are highly knowledgeable regarding the menu and may be viewed as an authority; nevertheless, the diner does not “consent to” or “refuse” the waiter’s comments. In some cases the diner may ask the waiter to make a choice for him. But even in this situation the diner is still acting autonomously and has chosen to have the waiter make the decision.
Health-care professionals might approach patients in a similar manner, asking them to choose from a “menu of choices” rather than give consent to a particular suggestion. The health-care professional should not merely present “the menu,” but should annotate it, adding that he would advise, perhaps strongly, a certain choice. When the patient chooses, the professional is perceived as an advisor who is more knowledgeable than the patient, but who is leaving him in charge, even if he chooses to have the professional make the final decision.
Revisiting the first case from the viewpoint of “choice” rather than “consent,” the doctor would explain the nature of the cataract and of cataract extraction, answering questions regarding risks and benefits, and tailoring the discussion to the patient’s needs and wishes. He might then say something like, “Did I answer your questions? I want to make sure they are all answered.” The doctor may then add, “What would you like me to do? I don’t think you want to choose to have new glasses, because it is very unlikely that they will help you. But you may choose to have the cataract extraction now. There is no urgency.” The patient may respond, “What do you advise?” enlisting the following possible response from the doctor:
“You came to see me because you were unhappy with your vision. You are in good health. Cataract surgery is usually successful and there is a great likelihood that such surgery would make you happier with your vision. As such, you may choose to have this surgery. If so, we will plan to proceed accordingly.”
In the case of the woman with uveitis, the doctor may offer a detailed explanation and advise that she has a variety of choices. Studies can be done to try to determine the cause of the uveitis; but because such a cause is often not found, the studies may not show anything. However, for some of the conditions that can cause uveitis, such as sarcoid and syphilis, there are effective treatments, and she may choose to have tests for those conditions. Because of her internet searches, the woman already knows that the usual treatment for uveitis is cortisone, but knowing that cortisone can cause cataracts and glaucoma, she challenges her eye doctor, asking him which poses the greater risk, the cortisone treatment or the uveitis. The eye doctor answers that in his opinion the uveitis poses the greater risk, and then explains the risk of missing a treatable condition such as syphilis or sarcoid. What he is trying to do is to help the patient prioritize her choices in a way that will allow her to best prioritize her treatment and testing options.
No matter how well-intentioned they are, healthcare professionals are not highly reliable judges as to the choices their patients will make.23 When physicians have ingrained in their minds the action that they want their patients to consent to in writing, an unspoken power dynamic is in play: the physician becomes the power figure who is often suggesting an action that the patient does not want; he is the individual to whom the patient must submit (consent) or against whom he feels forced to rebel (refuse).
Professionals are routinely instructed that they must have a discussion with the patient in order “to obtain an informed consent,” and that the consent must be in writing.24-26 But when a written informed consent is required, the health professional is in some way saying to the patient, “I know I have explained things to you and that you have consented, but I do not trust you, so I will require that you sign an ‘informed consent.’”
Health-care professionals are also advised to obtain an informed consent to protect themselves,24-26 to prove that a discussion took place and that the patient consented to the professional’s recommendation. Obtaining written permission is understandable and prudent, especially in a litigious society. A major reason for obtaining written consents is to protect the healthcare professionals or the administrators from being sued. In this regard, hospital nurses are firmly instructed to delay any surgery until a signed informed consent form is in the chart. This is clearly not done to protect the patient, and patients sense that. Furthermore, this method of obtaining an informed consent does not discourage lawsuits and has little protective effect.
While the written informed consent may be of some help in the courtroom, it does not engender trust or make the patient feel cared for. Some patients recognize the perfunctory nature of the form and, if they are content that they know what they need to know, will sign the form without reading it. Some manifest mild irritation about the waste of everybody’s time involved with the “record treating.” Other patients are seriously put off by the global “truth dumping” of some forms, which mention the potential for serious problems without putting them into perspective.27
Patients may choose not to follow their physicians’ recommendations. Presently, this is recorded on the chart as a refusal to follow advice. The antonym of “consent” is “refuse.” “To refuse” means “to decline to submit to or to undergo.”21 The person who “refuses” is stating that he will not do what another has suggested. For example, some patients may refuse to stay in the hospital, even against the advice of their physician. Some patients may refuse a certain test, such as having blood drawn. “To refuse” is to act contrary to a proposal, even if the action is merely “not consenting to” the proposal. When patients decide not to follow a healthcare professional’s advice, it is preferable to say that they “choose” not to follow a recommendation rather than that they “refuse.” Again, the word “choose” suggests a power balance that favors the patient, who is directing his/her own course of action, rather than being pushed into that course by the more powerful physician.
In healthcare, distinguishing between “choice” and “consent” is important, as choice encourages autonomy while consent discourages it. Fundamental to proper patient care is enhancing a patient’s autonomy and helping the patient take charge of his own life, especially as it relates to health. This is essential not only for philosophical and legal reasons, but also because self-care is pivotal to achieving a consistent state of health, which is, of course, the ultimate goal of therapy. To speak of “informed choice” rather than “informed consent” would help eliminate paternalism in medicine without detracting from healthcare professionals’ intent to be helpful or decrease in any way their ability to be beneficial. To speak of “informed choice” rather than “informed consent” will emphasize the importance of patient autonomy in making proactive health care decisions.
- Mayer, KF. “The process of obtaining informed patient consent.” Nursing Times 2002 Jul 30-Aug 5; 98(31):30-1
- Jenna, JK. “Toward the patient-driven hospital.” Healthcare Forum. 1986 Jul-Aug;29(4):52-9.
- Shendell-Falik, N. “Creating self-care units in the acute care setting: a case study.” Patient Education and Counseling. 1990 Feb;15(1):39-45.
- Lott TF, Blazey ME, West MG. “Patient participation in health care: an underused resource.” The Nursing Clinics of North America. 1992; 27(1):61-76.
- Meyer, MJ. “Patients’ duties.” Journal of Medicine and Philosophy. 1992 Oct;17(5):541-55.
- Furlong S. “Self-care: the application of a ward philosophy.” Journal of Clinical Nursing. 1996 Mar; 5(2): 85-90.
- Spaeth, GL. “Visual loss in a glaucoma clinic: I. Sociological considerations.” Investigative Ophthalmology 1970 Jan; 9(1): 73-82.
- McMurray, MH. “Seniors and self-care hemodialysis.” CANNT Journal. 1995 Winter; 5(1): 13-4.
- Brody BL, Roch-Levecq AC, Gamst AC, Maclean K, Kaplan RM, Brown SI. “Self-management of age-related macular degeneration and quality of life: a randomized controlled trial.” Archive of Ophthalmology. 2002 Nov;120(11):1477-83.
- Shoor, S MD and Lorig, KR RN DrPH. “Self-care and the doctor-patient relationship.” Medical Care. 2002; 40 (4 Supplement): II 40-44.
- Perry, CB and Applegate, WB. “Medical paternalism and patient self-determination.” Journal of the American Geriatrics Society. 1985 May; 33(5): 353-9.
- Hull, RT. “Informed consent: patient’s right or patient’s duty?” The Journal of Medicine and Philosophy. 10 (1985), 183-197.
- Benson, H MD. Timeless Healing: The Power and Biology of Belief. New York: Simon & Shuster, Inc., 1997.
- Miller, BL. “Autonomy and the refusal of lifesaving treatment.” The Hastings Center Report. 1981 August; 11(4): 22-8.
- Webster’s New World Collegiate Dictionary. 4th edition. Eds: Agnes M, Guralnik DB. Foster City, Calif: IDG Book Worldwide, Inc., 2001. p. 31.
- Ibid. p. 7
- Ibid. p. 12
- Ibid. p. 299
- Brody, Howard MD. The Healer’s Power. New Haven: Yale U. Press, 1993.
- Wear, Stephen. Informed Consent: Patient Autonomy and Clinician Beneficence in Clinical Medicine. 2nd ed. Washington, DC: Georgetown University Press, 1998.
- Webster’s New World Collegiate Dictionary, p. 1205.
- Ibid. p. 258
- Zweibel, NR and Cassel, CK. “Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies.” The Gerontologist. (1989) 29 (5): 615-621..
- O’Connor RJ. “Informed consent: legal, behavioral, and educational issues.” Patient counseling and health education. 1981 2d Quart; 3(2): 49-56.
- Woody, KJ. “Legal and ethical concepts involved in informed consent to human research.” California Western Law Review. 1981 Fall;18(1):50-79.
- Lee, S. “Medical paternalism: informed consent,” Law and Morals: Warnock, Gillick and Beyond. Ed: Simon Lee. New York: Oxford University Press 1986:63-67,95.
- New York Times. January 27, 1994.
GEORGE L. SPAETH received his MD from Harvard Medical School and graduated with a B.A. in History from Yale College. Following an internship at the University of Michigan, graduate work at the University of Pennsylvania, and an ophthalmology residency at Wills Eye Hospital, he served for two years in the Public Health Service as clinical fellow at the National Institute of Neurological Diseases and Blindness in Bethesda, Maryland. He was Director of the William and Anna Goldberg Glaucoma Service and Research Laboratories at the Wills Eye Institute/Jefferson Medical College from 1968 to 2007, where he is now the Louis J. Esposito Research Professor.