Capacity to Make an Informed Decision: An Essential Component of Every Initial Patient Encounter

Mrs. J was an 89-year-old woman who was admitted to the hospital after she tripped at home and fractured her pubic ramus and sacrum. She had been living independently until 1 month prior to this event; at that time, she and her daughter had decided that it would be best for Mrs. J to temporarily move into her daughter’s home until they could find a suitable “assisted living” arrangement because Mrs. J had become increasingly confused, with poor short-term memory and impaired judgment, and she had begun to find it difficult to care for herself, prepare her meals, and provide for a safe home environment. The orthopedic specialist who evaluated Mrs. J in the hospital after her fall thought that her fracture would not require surgery; however, prior to making a recommendation regarding her weight-bearing status, he recommended that she have a magnetic resonance imaging (MRI) scan. This plan was discussed with the patient and her daughter at the same time, and both agreed that this was acceptable. While there was no formal document naming the daughter as a surrogate, Mrs. J was agreeable to her daughter being present during all physician interactions. Other than her hemoglobin level, which had dropped slightly since her admission, and a low serum sodium value of 132 mEq/L, a chronic finding that was without change from her prehospital values, it was determined that Mrs. J was medically stable. That evening, after her daughter went home, Mrs. J was scheduled to have the MRI scan performed. Soon after leaving her room for the MRI scan, she returned after telling the MRI technician that “I do not want to have the test performed.” When questioned, the MRI technician reported that Mrs. J had appeared to be cognitively able to decline the test, as she had been “able to state her name, where she was, and the day of the week.”

This case provided me with a good opportunity to review the issue of informed consent and to remind you, the reader, that we must always think ahead and anticipate problems that may arise. Did Mrs. J have the ability to refuse the MRI that she and her daughter had previously agreed upon? If not, what could have been done to “force” Mrs. J to have this test, despite her asking that it not be performed? Clearly, no one is going to “force” a patient without capacity to have a test/procedure performed that he or she does not want, even if it was agreed upon by a legally defined surrogate, unless it was judged to be of grave importance and a delay in conducting the test/procedure would place the patient’s well-being in jeopardy. At times, patients must be sedated to have a test/procedure that is judged to be medically essential, although these cases often require ethics committee consultations and prior discussion with the Office of Risk Management to ensure that all medical-legal aspects have been appropriately followed. Forcing someone to have a test that he or she does not want to have even though his or her surrogate has agreed that it be done is never easy and is best reserved when the test is life-saving in nature and an outcome that is desired by all would be achieved by performing the test. The use of sedatives to achieve such an end is not without risk, and few would entertain this option unless the benefits truly outweighed the risks involved.

Informed consent is the process by which a fully informed person can participate in specific choices concerning his or her healthcare. It is an extension of legal and ethical rights that provide each person the right to direct what happens to his or her own body and the ethical obligation of every physician to involve the patient, assuming that he or she has the capacity to participate in his or her own healthcare.

For an informed consent to be complete, however, it must include a discussion regarding the nature of the procedure; reasonable alternatives to what is being proposed; and relevant risks, benefits, and uncertainties related to each alternative plan. There must be an assessment of the patient’s ability to comprehend what is being asked of him or her and an acceptance of the intervention that is planned.

Patients must be judged to have the capacity to make the decision, and the consent must be voluntary and without coercion. Patients should be provided with “adequate” information. When considering what should be said to the patient, it helps to keep in mind what a typical physician would say about a specific intervention, what the average patient would need to know to be an informed participant in the decision, and what this patient would need to know and understand to make an informed decision.

While it is usually evident which patients lack the capacity to make their own decisions, it is not always obvious. Patients who are under a great deal of stress may experience anxiety, depression, or fear that may cloud their normal judgment and ability to fully participate in the informed consent process. Patients should be able to understand their specific situation and the risks associated with the decision at hand, and communicate a decision based on that understanding. Just because a patient has a diagnosis of dementia, for example, does not automatically mean that he or she lacks the capacity to make an informed decision; every patient must be evaluated on his or her own merits.

Patients who are determined to lack the ability to make an informed decision must have a surrogate named to act on their behalf. Planning ahead is always best in these cases to avoid urgent matters from arising. As mentioned previously, even if Mrs. J’s daughter was appointed as a surrogate after it was decided that Mrs. J lacked the ability to make an informed decision about future testing, it would hardly seem appropriate to sedate her to obtain an MRI that could be delayed until further discussion and planning took place. In brief, components of decision-making capacity include the ability to:

1. Understand the options that are being presented
2. Understand the consequences/potential outcome of choosing each of the options
3. Evaluate the personal costs and benefits of each of the consequences and relate them to one’s own set of values and priorities

This process affords the individual an opportunity to give a rational reason why he or she would decide on a particular option, even if it means not agreeing to have a test/procedure at all.

In Mrs. J’s case, there were few risks associated with her refusal to have the MRI conducted as scheduled. At most, she would need to remain non–weight-bearing until further evaluation was completed and there was an opportunity to better clarify her ability to make an informed decision and refuse a medically recommended test or to re-discuss this matter with her daughter, who, at this point, should be officially named as Mrs. J’s surrogate. In fact, the orthopedic specialist re-evaluated the situation the next morning upon hearing of Mrs. J’s refusal to have the MRI and decided that she could, in fact, begin a weight-bearing program of physical therapy based on prior x-ray studies and a repeat physical examination. While at this point there was no immediate need to more formally assess Mrs. J’s ability to make an informed decision or to proceed to have her daughter appointed as an official surrogate, it would seem prudent to initiate this process of assessing the patient and to document the outcome of such an evaluation to avoid future problems when more acute decisions that might have significant consequences may need to be made. In this case, Mrs. J was judged to not have the capacity to make an informed decision, and her daughter assumed the role of her official surrogate decision-maker.

Whenever dealing with a patient who has required a test/procedure that might have a significant adverse outcome, I have always evaluated the individual’s ability to comprehend the various options being presented at least twice, with several hours lapsing between my discussions, provided the time and situation allowed for this. Of course, this assumes that there were no medications given to the patient in the interim that could cloud the sensorium, the circumstances being considered did not change, and the person did not have a delirium that might result in a different cognitive state at each of the discussions. During my second visit, I would ask the individual to express in his or her own words what we had discussed during our first meeting, exactly why the test/procedure was to be done, what alternatives could be done in its place (including doing nothing), and what would be the potential outcome of each of the options being presented. Unless the individual was able to recall the prior conversation that had occurred just a few hours earlier and was able to recall the various options and potential outcomes, I would feel uncomfortable assuming that he or she had full capacity to make an informed decision; further steps would need to be taken to ensure that the patient’s rights and well-being were being protected. Clearly, time is not always on our side and decisions often must be made without the luxury of a follow-up conversation. In my experience, physicians who get the patient response that they were hoping for the first time usually don’t pursue matters further; they trust that they have the patient’s best interest at heart and are acting appropriately, even if the informed consent did not meet the extra scrutiny listed above.

Mrs. J lacked judgment and insight into her problems, even though she knew her name, where she was, and the day of the week. She was unable to recognize the potential consequences of prolonged bed rest and could not appreciate the reason why the MRI was to be conducted. While the physician in this case was able to make a clinical decision with the information that was available and the MRI was eventually not felt to be necessary, this is not always the case, and outcomes are not always what one hopes for. Despite the fact that Mrs. J was unable to make an appropriate informed decision to refuse this test, few would argue that the proper course was to delay the MRI until further discussion and evaluation took place; its non–life-saving nature made it less of an urgent matter.

Just as we teach medical students and residents to consider discharge planning even at the time of a patient’s initial admission to the hospital, one must also consider early in the course of a patient’s illness whether he or she has the capacity to make an informed decision and take whatever steps are necessary at that time to ensure that the patient’s wishes can best be carried out while recognizing that his or her capacity to make an informed decision may change over time, in either direction. Previously executed advance directives should always be obtained whenever possible; if none exist and a person’s decision-making capacity is found to be lacking, an appropriately designated surrogate should be appointed to help in the decision-making process as necessary. By anticipating problems that may arise, not only can we be proactive, but we can also know that we are representing the patient’s wishes to the best of our ability.

Dr. Gambert is Professor of Medicine and Associate Chair for Clinical Program Development, Co-Director, Division of Gerontology and Geriatric Medicine, Department of Medicine, University of Maryland School of Medicine, Director, Geriatric Medicine, University of Maryland Medical Center and R Adams Cowley Shock Trauma Center, and Professor Medicine, Division of Gerontology and Geriatric Medicine, Johns Hopkins University School of Medicine, Baltimore, MD.