Assessment of Decision-making Capacity

by Mark Hughes, MD, MA

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    00:01 So let me give you a mnemonic to think about these four aspects of decision-making capacity, and what to do when you think the patient may not have capacity.

    00:11 So it's called CURVES.

    00:13 The first for C is choose and communicate.

    00:18 The second is understand all relevant information.

    00:22 Third reason and provide reasons.

    00:27 And fourth, the value system concordance.

    00:31 So these are going to be similar to those four aspects we just talked about, and a way to assess whether the patient has capacity.

    00:39 In the informed consent lecture, we talked about situations where informed consent may not be possible, or you may have a patient that is unconscious and not able to communicate.

    00:50 And those emergency situations where the health of the patient or their bodily function is in serious jeopardy, and you need to act quickly.

    00:58 In those situations, there may not be time to assess capacity, you need to take care of the patient.

    01:05 If you find a patient that lacks decision making capacity, as we also mentioned in the informed consent lecture, there may be the need to find a surrogate, again, emergency situation, that may not be time to find a surrogate, but if it's a non emergency and informed consent needs to be done and need to have decisions made.

    01:22 You need to find a surrogate, so we'll talk more about that.

    01:27 Let's go through each of these steps in the mnemonic.

    01:30 First of all, communicating a choice.

    01:33 So the communication can come by a variety of means.

    01:36 Verbally, so if the patient can talk, they can communicate with you that way.

    01:41 Written, they might be able to write things down and both be able to answer questions, but also communicate what their choice would be, or you might have a patient with locked in syndrome.

    01:51 The only way that they communicate is with blinking their eyes or maybe a patient only uses hand gestures, or maybe a patient uses sign language.

    01:59 So whatever means of communication that the patient can accomplish.

    02:03 If they're able to communicate a choice, that's going to be the first step, and actually the last step that we need for determining decision making capacity.

    02:11 But in this mnemonic, we're counting it as first.

    02:16 So it's not only communicating, but then they have to make a choice.

    02:20 And the idea is that there has to be some consistency in that decision made.

    02:25 So they might be able to change their mind.

    02:27 But once they've made a decision, we'd hope that they won't keep vacillating, going back and forth hemming and hawing as to whether or not they're going to stick with that decision.

    02:37 So hopefully, there's some consistency in the decision.

    02:41 And if you really find a patient's having trouble making a decision, they're unsure, and you're not really clear about them communicating a choice.

    02:49 It's important to ask them what's making it hard for them to decide, maybe more exploration will get a better understanding of what they're experiencing, what they're thinking about, and hopefully get to a point where they can communicate a choice.

    03:03 The next in the mnemonic is understanding.

    03:05 So we did talk a lot about that in the informed consent lecture.

    03:09 So again, they need to understand all the information that's been disclosed to them in terms of the indications for the treatment or intervention that you're proposing, the risks of that treatment, the benefits why you're doing it, and what you're hoping to achieve, and if there are any alternatives to that treatment.

    03:26 It's especially important for patients to understand the implications of the risks.

    03:30 Because, you know, if we're worried about side effects or complications, the patient understands what might happen and what we would do in response to address those risks or those harms.

    03:42 So it's important to assess their understanding when you talking to them just looking for verbal or nonverbal clues, you know, their body language, their posture, do they seem like they're attentively listening to what you're saying? All of those might help you to figure out if they're understanding what you're disclosing in terms of the information.

    04:03 But then you might actually make a point of asking them questions.

    04:06 So can you tell me in your own words, what I've said, so have them repeat back what the information is? Or ask them what is your understanding of the situation? What would you tell a family member about your situation, and hopefully, that exploration their explanations will show you that they've understood the information.

    04:28 So there can be a lot of factors that can influence a patient's understanding.

    04:32 So their education level, their literacy, and that's not only their reading ability, but also their health literacy.

    04:40 How familiar are they with the, you know, health care setting? Have they had experience in, you know, hearing about medications or learned anything in school about you know, how the body works? All of those may influence their ability to understand the information you relate to them.

    04:57 If you're giving them written material, you know, are they able to read it is? Is it written at a level that is commensurate with their educational level? We have to pay attention to patients that might have hearing or visual acuity problems.

    05:10 So again, making it accessible to those individuals.

    05:14 We may have patients that don't speak the language that the clinician speaks as their primary language.

    05:21 So if it's a secondary language, maybe we need to use an interpreter to help give the information to the patient in a language that they understand.

    05:32 There may be other things especially when patients are in the medical setting that could affect their ability to understand information.

    05:39 Just being in pain, you know, a patient is coming in.

    05:42 And you know, all they can think about is the pain they're experiencing in their body.

    05:46 Let's say, they're coming in with, you know, cholecystitis, and they've got, you know, severe right upper quadrant pain, all they're thinking about is that are they gonna be able to hear information, process it and understand the information.

    05:58 Just being ill, you know, think of yourself if you've had the flu, or, you know, other illness, just help you rundown and fatigued, you know, you may not be able to really process the information or understand it, whether there are medications that have been prescribed to the patient that might affect their ability to think or comprehend the information.

    06:21 Sometimes we as the clinicians make it hard for them to understand because we give them information overload.

    06:26 It's so much information where we haven't taken pauses or given an opportunity for them to sort of hear a chunk of information, understand it, process it, if we just give it you know, one big data dump, that may be difficult for them to understand all the information.

    06:42 And lastly, you know, how clinicians relay the information, the framing effects of how we present the information.

    06:49 So if it's something like probabilities, are we only focusing on the positives throwing 90% chances.

    06:54 This is going to be successful without talking about the 10% that may not be successful.

    07:00 So how we frame the information may influence ultimately the patient's understanding.

    07:07 So what can you do? So we talked about a lot of these strategies in the informed consent lecture.

    07:12 So I won't go through them here.

    07:13 But just the idea of painting a picture for the patient, trying to use nonmedical terms is the best way to help them understand the information.

    07:24 So in our CURVES mnemonic, the next step is going to be reasoning.

    07:28 And when we're thinking about autonomy, or a person's ability to make their own decisions, they're going to be different levels of ability to reason.

    07:37 The first is just they able to give a reason, you know, just being able to state a reason, maybe that's the foundational need to just demonstrate that they have some degree of autonomy.

    07:50 The next is, is the reason based on some rationale, or have they rationally manipulated the information to come up with the reason that they've made their choice.

    08:00 It may be that we use the reasonable person standard, you know, so that's something we talked about in the informed consent lecture, where, you know, an outside observer would say, well, this person is making a decision that a reasonable person would make.

    08:14 It's not that people can make decisions that are different from a reasonable person.

    08:18 But this is just one another element in terms of demonstrating reasoning ability.

    08:25 When we've given them information about risk and benefits, so maybe when they're giving their reasons, they're actually applying some assessment of Well, I think this might be risky, but I see the benefit of going through this surgery.

    08:40 So if they can give that risk benefit calculation in their own words, that's further evidence of their reasoning ability.

    08:48 And then lastly, what we're ultimately trying to achieve is they're trying to integrate the information we've given them into their own life situation, their own values, their own preferences.

    08:59 So the reasons they give might factor in some of these other things about risk and benefits and so on.

    09:04 But then it's also adding in the values that they think are important.

    09:11 So in the curves mnemonic, we next have values.

    09:13 So how do we think about a patient's values? What I ultimately think this is about is the patient's conception of the good, what they think is important in their life, their core set of values of what makes them who they are.

    09:30 So there's gonna be various ways that we might explore that we'll demonstrate.

    09:35 Can we give an example before we, you know, talk about that.

    09:38 So take the classic example of end of life decisions.

    09:43 A set of values for a particular patient.

    09:46 One patient might say, "Well, quality of life is more important for me." So how I'm going to make treatment decisions, what's going to be my quality of life as the disease progresses or I undergo this treatment and quality of life might be a more important determination of how they make decisions.

    10:04 Whereas another patient would say, "Well, quantity of life, if I can live longer, you know, I'll go through with this treatment." Irrespective of any burdens that might be associated with the disease process or with the treatment, quantity of life becomes more important.

    10:18 So there's just a classic example of a value difference quality of quantity of life.

    10:24 And then you're going to try to explore that with the patient of how that applies to the particular treatment decision.

    10:32 So the values have to also be consistent.

    10:36 So persons lived their life a certain way, and maybe have a value system that they've tried to adhere to over the course of their life.

    10:44 Maybe that's based on religious tradition, or cultural aspects.

    10:49 The decisions that they're making now sort of have to be consistent with how they've lived their life.

    10:53 Certainly people can change their mind, but you want some consistency in their values.

    10:58 Take another example of the patient says, "You know, I want to live longer." But now they've got a serious infection, you're offering a treatment for the infection, and they're refusing it.

    11:09 It seems to have some inconsistency of, here's the value of quantity of life wanting to live longer.

    11:15 But not accepting the treatment that will actually achieve that the disease progress, the disease may progress.

    11:21 And that's going to be counter to their values.

    11:23 The other point about values and exploring them is that they should be the patient's own, they shouldn't be imposed upon them by family members.

    11:31 Again, if we're trying to think about respect for autonomy, this is the patient's own values and how they're going to apply it to the treatment decisions.

    11:39 And as I mentioned, not only internal consistency, but some stability over time, in those values.

    11:44 They have to be stable enough in order to permit the decision.

    11:48 So the patient makes a decision, can adhere to it over the course of the discussion, sort of allow the initiation of the treatment, and then see that it's implemented, make sure that you know they follow through with it.

    12:01 So those are going to be the four elements of C-U-R-V.

    12:05 The other part of this is the patient's appreciation of the situation that's also getting to their value system.

    12:12 So there might be few questions that you can ask the patient to get an understanding of their appreciation of the situation.

    12:18 So just basically, what do you believe is wrong with you? Do you believe that you need treatment? What do you think the treatment will do for you? What do you believe will happen if you're not treated? And why do you think your doctor has recommended this treatment? And lastly, again, tying into the values, how does this recommendation fit in with your values?

    About the Lecture

    The lecture Assessment of Decision-making Capacity by Mark Hughes, MD, MA is from the course Informed Consent and Capacity.

    Included Quiz Questions

    1. Choose and communicate
    2. Understand some of the information
    3. Recognize your weaknesses
    4. Provide an answer
    5. Elective
    1. High-school reading level
    2. Severe pain
    3. Information overload
    4. Illness
    5. Medication affecting cognition
    1. Using medical language
    2. Disclosing information slowly and clearly
    3. Using analogies
    4. Drawing pictures
    5. Using numbers clearly
    1. Ability to give a reason based on one's values
    2. Ability to give risk-/benefit-related reasons
    3. Ability to give a reason as judged by a reasonable person's standard
    4. Ability to give a rational reason
    5. Ability to give a reason
    1. Consistency, patient ownership, stability
    2. Consistency, patient ownership, relatability
    3. Relatability, patient ownership, stability
    4. Relatability, family ownership, stability
    5. Consistency, family ownership, stability
    1. What do you believe will happen if you are not treated?
    2. What is a treatment?
    3. What is a disease?
    4. What is happening?
    5. What do you recommend?

    Author of lecture Assessment of Decision-making Capacity

     Mark Hughes, MD, MA

    Mark Hughes, MD, MA

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