Decision-making Capacity
Updated January 29, 2024
What this section covers:
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The case of J.R.
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Who might lack decision-making capacity?
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General versus specific competence
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Standards for the assessment of competence (capacity to consent)
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Substitute decision-makers
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The clinical approach: a case-based review
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Key points
The Case of J.R.
J.R. is an 84-year-old widowed male who has been looked after by his daughter Sarah for the past 15 years. Sarah was recently forced to move into a nursing home because she is incapable of taking care of herself after a second stroke.
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J.R. has recently met a young woman through a dating service, and they have plans to marry. He has decided to see his attorney to amend his will. J.R. lives in his own home, pays his own bills, and manages his own money. He is in good health. He understands the logistics of amending his will.
Here’s the question: does J.R. have the capacity to make this decision? The result would have serious consequences; for one thing, his daughter would be cut out of his will.
Who might lack decision-making capacity?
A person with more advanced dementia might not understand that they are being asked to make a choice. They might not remember facts about a test or surgery being proposed. Each time the question is posed, they might say yes or no, apparently at random. It is unlikely that they would be able to state risks and benefits of the test or surgery, explain the procedure, or describe how it might affect their life afterwards.
The person could be in the midst of a delirium.
They might believe they are still living at home with their parents, and mistake the doctor for a relative. They might be delusional, thinking that going to surgery might get them out of their room, away from the wild animal under the bed.
The person might be suffering from depression. If asked, they might say that it’s all hopeless, that there’s no reason to have surgery or take tests because they’re going to die soon, anyway.
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The person might be suffering from psychosis, with delusions and/or hallucinations. In this case, they might be making decisions based on experiences unrelated to the question posed, decisions that are not in their best interest.
Many other conditions or situations can cause a person to lack decision-making capacity. Some of these conditions are reversible, so that a person who is deemed to lack capacity now could have capacity restored when they are well again. This is often the case with delirium. On the other hand, some conditions— such as dementia due to advanced Alzheimer’s disease — are not reversible, so capacity is less likely to be restored.
General vs Specific Competence
General competence refers to the ability to handle all of one’s affairs in an adequate manner. It is not an all-or-nothing phenomenon; it exists along a spectrum, with total competence at one end and total incompetence at the other.
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This cartoon gentleman appears to be demonstrating total competence.
Specific competence is always determined in relation to a particular act or decision. For example, in J.R.’s case, the question is whether he is competent -- has the capacity -- to change his will. (We’ll get back to J.R. later.)
Other examples of specific competence:
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Is a person competent to consent to having open-heart surgery?
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Is the person competent to consent to taking a new medication?
You can see that it may be more difficult to demonstrate competence for a complex decision like open-heart surgery than to demonstrate understanding about a new medication.
General vs specific competence: an analogy
Here is a jar of marbles. If the individual marbles represent specific competencies, then the jar with all its marbles would represent general competence. One way to demonstrate general competence would be to test every specific competence one by one, and see whether the jar becomes full. This would take a very long time, so assessment of general competence has been standardized in a different way, as described below.
A Rule of Thumb
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If a patient is generally incompetent, you can assume you will find specific deficits or incompetencies on evaluation.
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If patient is generally competent, you don’t know if you will find specific deficits or incompetencies until you ask questions.
Standards for the assessment of competence (capacity to consent)
Capacity to consent can be determined by any qualified clinician. When it comes to general capacity, however, a psychiatrist is often called to make the determination. The psychiatrist may call on a neuropsychologist colleague to do detailed cognitive testing, if needed.
Assessment of General Competence
The four pillars of general competence are the following:
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Awareness of the situation
2. General life functioning
3. General reasoning ability
4. Mental status: focused on cognition, psychosis, and mood
The psychiatrist would ask the patient a series of questions to determine awareness of their situation. In the case of J.R. introduced above, questions would be directed towards what he understands about his daughter’s current life and about the risks inherent in meeting people online and rushing into new relationships.
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Then attention would turn to how J.R. is functioning in daily life. As noted above, J.R. lives in his own home, pays his own bills, and manages his own money. He is in good health, and he understands how to go about amending his will.
General reasoning ability would be assessed. This could be done by observing his answers to questions about his daily routine or more formally, with questions like this: What would you do if you found a wallet on the street with money in it? Or what would you do if you were away on vacation, and you ran out of medication? These questions help to evaluate judgment. Unavoidably, some of these questions also tap into personal ethics.
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Mental status would be assessed during the interview, with careful observation and questions about any psychotic symptoms (delusions, hallucinations, or thought disorganization) or mood changes. Cognition would likely be assessed using a brief screening instrument like the Montreal Cognitive Assessment or the Mini-mental State Exam, pictured below. Further, more detailed evaluation of cognition could involve referral for neuropsychological testing.
Assessment of Specific Competence
Specific competence is determined in relation to a
particular act or decision. The four pillars of specific competence are the following:
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1. Ability to Communicate a choice
2. Factual understanding of the options
3. Appreciation of the consequences of each decision
4. Good reasoning about this specific question
The most basic ability required is to communicate a choice. This would be compromised in the case of an individual who is comatose or who suffers from a neurological condition that renders them unable to use language.
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Evaluation of factual understanding takes place after the patient is told about all the options, and any questions are addressed. At that point, they are asked directly about what they understand.
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An appreciation of the consequences of a particular decision requires higher-level thinking. The individual is encouraged to think each option through so that they and their medical providers understand what the decision will mean in terms of their own situation.
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It was this step of the capacity evaluation where J.R.’s thinking changed. He was given information about his daughter’s financial straits. She had told the team she would run out of money in six months and would have to leave the nursing home. J.R. was asked how he felt about that, and that was what changed his mind about amending his will. So, in the end, the question of J.R.’s capacity was side-stepped. He did not change his will.
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Last, the patient is asked why they have chosen one option over the others. They are pressed to explain their reasoning. In some cases, the reasoning doesn’t make sense. For example, one patient understood everything about a proposed surgery for a gangrenous toe, but refused surgery because “a bad man put a hex on me back in Haiti, and surgery won’t help.” Despite repeated attempts to dispel this idea, he wouldn’t change his mind. In that case, the patient was deemed not competent to make that particular decision. You might argue that his cultural belief should be respected, but in view of the seriousness of the situation (likely death), his family intervened legally to get him to the operating room. The surgery was successful, and he was ambulatory upon discharge.
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Let’s look back for a minute at the four pillars of specific competence. The first two — the ability to communicate a choice and a factual understanding of the options — are evaluated in what is informally called an “easy test” of competence. This could consist of a few simple questions posed to the patient by the surgeon or primary clinician. Often, this is all that is needed in cases where the patient is accepting a high benefit, low risk procedure or where the patient is rejecting a low benefit, high risk procedure. This is summarized in the table below.
On the other hand, a “hard test” of competence is needed when the patient is rejecting a high benefit, low risk procedure or seems to be too easily accepting a low benefit, high risk procedure. These decisions require further evaluation of the patient’s appreciation of the consequences of a decision and a demonstration of good reasoning ability about the decision. A psychiatrist should be consulted to perform this evaluation, and a neuropsychologist may be asked to do in-depth testing.
Warning! A Note about Incompetence vs Capacity to Consent
If you ever find yourself in court, one important thing to know is that the declaration of general incompetence is made by the judge -- not the clinician or family – using information obtained by the medical team during the capacity evaluation. Technically speaking, the correct term in the medical field is capacity to consent while competence is a legal term.
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Try to keep the judge in good humor!
For people who lack the capacity to consent, who makes medical decisions?
Specific incompetence
As noted earlier, the declaration of a specific lack of capacity
(incompetence) can be made by any qualified clinician. When this occurs, often family or interested others are asked to consent on behalf of the patient.
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The exception to this informal arrangement involves extraordinary procedures such as sterilization, psychosurgery, and electroconvulsive therapy (ECT). When a patient is not competent to consent to these procedures, a court order is required. The judge makes the decision.
Substitute Decision-makers​
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If the patient is declared generally incompetent, they might have a guardian appointed for this purpose.
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In some cases, the judge might make a decision, if it is a one-time, time-limited issue.
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Other decision makers come into play when durable powers of attorney or health care proxies exist.
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In informal decisions involving minor issues, family and/or friends may be asked to assist with decision-making. The medical team will help guide this process.
Standards for Making a Substituted Decision
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There are two accepted standards for substitute decision-making:
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What is in the best interest of the patient.
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What the patient would have wanted, if known.
Either standard can be used.
The clinical approach: a case-based review
The Professor
A 73-year-old male professor emeritus of chemistry presented to the ER with chest pain. He underwent cardiac catheterization, and two blocked vessels were found. The cardiologist was unable to repair the vessels with balloon angioplasty and stenting.
Coronary artery bypass grafting (CABG) was recommended. The patient refused.
The Approach
General competence is assessed
For a specific competence question like this, it is not always necessary to assess general competence first. The cardiologist was sufficiently concerned about the refusal, however, that in this case, the psychiatry service was consulted to assess the patient’s general competence. The patient was found to be well aware of the situation, and was functioning independently in the community. His general reasoning ability was excellent. He scored 30/30 on the MOCA, was not psychotic, and exhibited no mood abnormalities.
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Specific competence is assessed
The psychiatrist was present when the surgeon reviewed the consent form for surgery with the patient. The surgery was explained in detail, along with risks and benefits. Visual aids were used to clarify exactly what was proposed.
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The psychiatrist proceeded directly with the specific competence assessment while the surgeon was still present. The patient was well able to communicate his choice not to have the surgery. He had a superior factual understanding of his options. He was aware that the consequence of his refusal was that he would have to take other action immediately.
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Specifically, the patient was concerned that the surgery at that hospital was an open-heart procedure that would require a heart-lung machine (“on pump”). He knew that his preexisting diagnosis of atrial fibrillation would put him at higher risk for this procedure. He was aware that other facilities in the same city offered a minimally invasive surgery that would not require being on pump. The surgeon and psychiatrist agreed that his reasoning was sound.
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So, did the chemistry professor demonstrate his competence to refuse surgery? Clearly, yes. But this case illustrates something else about the process of determining capacity. What if the surgeon had spent a little time with the patient when he refused surgery, and simply asked him why? The competency evaluation would not have been needed. The surgeon could instead have provided referrals to nearby facilities where the minimally invasive surgery was offered. The moral of this story is that a little probing of the patient’s reasoning at the outset can go a long way towards simplifying these situations.
A Case of Dehydration
An 86-year-old man was brought to the ER in a delirious state. He was found to be severely dehydrated. He was combative with staff, and loudly refused to have an I.V. placed or to drink anything to get rehydrated. He knew what an I.V. was, and he knew what dehydration was, but he wouldn’t budge even when told that his kidneys were at risk.
This patient was able to communicate a choice, and had a basic factual understanding of the issues. He lacked an appreciation of the consequences of his decision, and his delirium had completely compromised his ability to reason about the decision.
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A family member was asked to decide on his behalf. Note that, although this case would normally require a “hard test” of competence because the patient was refusing a low-risk, high benefit procedure, a full evaluation was not possible because of the patient’s confused state.
A Case of Poor Bedside Manner
A 54-year-old female came to the clinic reporting abdominal pain. Diagnosed with gallstones, she was told she needed surgery soon. She refused to sign a consent. While capacity was being assessed, it became apparent that her decision was motivated by her angry feelings toward the surgeon. Upon first meeting the patient, the surgeon had said, “You wouldn’t have this problem if you weren’t so fat.”
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To make a long story short in this case, the patient was generally competent, was able to communicate the choice not to have surgery, and understood very well that without the surgery, she could become seriously ill. Her capacity broke down around her reasoning about the situation. This was another case in which the resolution required something outside the capacity evaluation. The surgeon apologized, the patient forgave him, and the surgery was a success.
Key points
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General competence refers to one’s ability to handle all of one’s affairs in an adequate manner.
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Specific competence (capacity to consent) is defined in relation to a specific act or decision.
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There are clearly defined standards for the assessment of competence, as described in this section.
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When an individual is found to be incompetent (lacking capacity to consent), a substitute decision-maker is used.
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The reasons for incompetence may be reversible, as in the case of a person suffering from delirium.