Decision-making Capacity in Special Groups

by Mark Hughes, MD, MA

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    00:01 So now let's talk about patients where you've determined that they lacked decision making capacity.

    00:06 There are going to be some special considerations in how we take care of these kinds of patients.

    00:11 And I'm thinking about three kinds of patients that might have decisional impairment.

    00:15 The first would be the patient that had capacity, but as a result of delirium, perhaps they have temporarily lost their capacity to make their own decisions.

    00:26 We talked about that in previous lecture.

    00:29 There may also be patients that previously had capacity, but now it's permanently been lost as a result of cognitive decline.

    00:37 So a dementia patient that has lost the ability to make their own decisions.

    00:43 And third, there might be patients who have lack of decision making capacity that never had capacity in the first place.

    00:49 And that would be individuals that have developmental intellectual disability.

    00:53 So they're adults, but they don't have the ability to make their decisions.

    00:58 So all of these kinds of patients that don't have capacity, once we've made that determination, we're going to need to think about some specific things.

    01:07 At the start, it's important to recognize that they may still retain the ability to make some decisions.

    01:12 So thinking back to the sliding scale notion of capacity, there may be simple decisions that even patients that globally might not be able to make more complex decisions, they still might be able to make simple decisions.

    01:25 And it might also be possible with them to ask ascent or descent, so yes or no to a treatment.

    01:31 And that's something we talked about in the informed consent lecture.

    01:35 It's also important to recognize that maybe there are things we can do as clinicians to help people to have capacity.

    01:43 So whenever possible, trying to build up their capacity to make decisions, whether that's aiding their understanding in terms of how we describe the information, if we draw pictures, if we really try to bolster, their information processing ability, or it maybe they have the medical condition that's created delirium.

    02:02 If we remove the conditions for the delirium, they regain their capacity, all of these things are going to be important to what we ultimately want to do is, you know, if possible, help people make their own decisions.

    02:15 When it is not possible when they are truly incapacitated, then we need to find another person to make decisions for them.

    02:23 So in the informed consent lecture, we talked about the ability of a surrogate decision maker to speak on behalf of the patient.

    02:30 And we talked about two standards by which surrogates can make decisions for patients that lacked decision making capacity.

    02:37 Either a substituted judgment, so they know the patient well enough, they know the patient's values, that they can apply it to the particular medical situation, to render a decision, or without really knowing how the patient would make the decision.

    02:50 They gather all the information, go through the same informed consent process and determine what's in the best interest of the patient.

    02:57 So those are going to be important things for adults that lack decision making capacity.

    03:02 So that's for adults, where we've determined that they might lack decision making capacity, you know, so for minors, we cannot presume that they have decision making capacity.

    03:11 But nonetheless, it's important that we can assess it.

    03:14 So especially as we think about adolescents moving into young adulthood, they are gaining increased autonomy.

    03:22 And so we want to try to determine can they make their own decisions.

    03:28 And it may be that the presence or the magnitude of their capacity to make decisions is going to vary with their age and their cognitive development.

    03:36 So a 12-year-old making a decision versus a 16-year-old making decision.

    03:40 They may differ, and it may be jurisdictional as well as to whether or not we would permit a younger child or younger adolescent to make their own decisions.

    03:51 It's also important for the clinician, if they're going to be assessing the capacity of a minor is making sure that they are free from any undue influence by an authority figure or peer.

    04:01 If this really is a means of demonstrating their own autonomy, we don't want them to be sort of influenced by that authority, that sort of forcing the decision on them, or peer pressure that might influence how they make decisions.

    04:14 Similar to what we would do for adults, we want to check their capacity to understand the information, communicate back their understanding of the information that we've given them, show that they can reason about it and deliberate the risks, the benefits, alternatives, to make their own decision.

    04:31 Now with adolescents, especially, you know, it's hard to know if they have a stable set of values, you know, people are growing or developing, they might change their value system over time.

    04:43 But at least in terms of making this particular medical decision, you want to have some stability in the values that they're using to make the decision.

    04:52 And lastly, that they have emotional maturity to make reasoned decisions.

    04:56 So again, when we talked about peer pressure or family pressure, are they able to withstand that they have the maturity say, "Well, no, I'm making this decision for myself.

    05:05 I'm not going to, you know, just acquiesce to a family member or friend." Also, you know, can they handle the fear of having an illness or being diagnosed with something? Can they be emotionally mature enough to sort of put the fear aside and come up with making a decision? Lastly, you know, it's also after they've made the decision, will they have any misgivings about the decision that they've made? So a sign of sort of mature decision maker is they accept the decision, they try to ollow through with it and see what happens.

    About the Lecture

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

    Included Quiz Questions

    1. Using visual aids
    2. Avoiding the underlying medical condition
    3. Asking for advice from a sibling
    4. Asking patients to communicate using sign language
    5. Having a patient nod or shake their head
    1. Substituted judgment, best interest
    2. Worst interest, best interest
    3. Substituted judgment, inherited judgment
    4. Worst interest, substituted judgment
    5. Inherited judgment, best interest

    Author of lecture Decision-making Capacity in Special Groups

     Mark Hughes, MD, MA

    Mark Hughes, MD, MA

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