Case: Determining Decision-making Capacity of a 38-year-old Woman with Abdominal Pain

00:01 Now that we've learned about the concepts of informed consent and decision making capacity let me walk you through a case study looking at decision making capacity.

00:12 Let me introduce you to our patient.

00:14 This is Ms. Beth Smith.

00:16 She's 38 years old.

00:18 She has a history of intellectual developmental disability.

00:21 She works as a dishwasher in a fast food restaurant, she lives with her parents.

00:25 She did attend vocational school and achieved a sixth grade reading level.

00:31 She's coming in for an acute visit with a two week history of intermittent right upper quadrant abdominal pain.

00:37 And she was getting this after eating fatty foods.

00:41 She describes the pain as a dull ache it sometimes radiates to a right shoulder.

00:45 There has been some associated nausea and vomiting.

00:49 The pain and nausea seem to resolve after about 30 to 60 minutes.

00:53 She has not had other GI complaints like diarrhea or constipation, and she's had no fever.

00:59 Notable that she does have a history of type two diabetes and obesity.

01:04 She takes Metformin for the diabetes.

01:07 Her family history is notable for her mother having had a colon cystectomy and her father has hypertension and hyperlipidemia.

01:14 Her review of systems is otherwise unremarkable.

01:18 So you asked her permission to examine her.

01:22 And you find that she's in no acute distress.

01:26 She's accompanied by her mother.

01:28 Her vital signs are good.

01:29 She is a febrile, she has a BMI of 31 putting her in the obesity category.

01:36 Her abdominal exam is unremarkable.

01:38 She has positive bowel sounds, it's soft, non tender, and no Murphy sign.

01:44 You suggest that she gets some labs, so get her permission to get the phlebotomy, find that she has a normal, complete blood count or kidney and liver function tests, her good or lipases normal.

01:59 You also get her permission do a right upper quadrant ultrasound that's a little more involved in a blood draw some discomfort associated with the ultrasound probe, but otherwise a relatively benign test.

02:09 She agrees to that.

02:11 It does show gallstones but there's no ductal dilatation.

02:16 So let's just pause there for a minute.

02:19 What do you think the diagnosis is and after you've made a diagnosis, what would be your recommended treatment for Ms. Smith? All right, so this is very likely symptomatic cholelithiasis, the ultrasound showed that she has the gall stones.

02:36 The pattern of eating fatty foods and getting the abdominal pain and nausea would go along with that.

02:43 The general recommended treatment would be elective laparoscopic cholecystectomy, there is the option of an open colas, mastectomy.

02:50 Could also observe this and see how she does over time.

02:54 But really you're feeling you know she's having these repeated episodes, you want to try to resolve these symptoms a biliary colic decrease her chances of having any future complications, like, actually getting cholecystitis or calling giantess, or maybe even gallstone pancreatitis.

03:09 So you want to describe to her that we can help relieve your symptoms, get you feeling better, try to avoid these attacks from happening.

03:19 If we do go with surgery, there's potential for damage to surrounding structures.

03:24 It's always a risk of bleeding or infection or pain when you have surgery.

03:28 But, you know, you think this is a recommended thing for the patient.

03:33 She'd have to anticipate what would happen after surgery, it's usually you know, same day, she can go home the same day, she'd have to take it easy for a couple of weeks, she might need pain medication, longer term, you know, she might get diarrhea or gas or bloating as a result of not having your gallbladder.

03:49 But this is what you would recommend and have to discuss all of this with her in understandable terms.

03:57 So she is an adult, so you would presume that she has capacity as an adult.

04:03 But you know, from her history, that she has some vulnerabilities, so she has this intellectual developmental disability, maybe her cognitive function might be not sufficient to actually have an informed consent discussion and have her make the decision on her own.

04:22 She does demonstrate some independence.

04:24 She's working on a job on her own, but also some dependents that she's living at home with their parents.

04:30 So this is really an opportunity after you've gone through the informed consent process to specifically assess her decision making capacity.

04:40 So you're going to go through the informed consent process, you're going to use understandable language, try to gear it towards her educational level, might be helpful to use visual aids, so actually drawing a picture of the anatomy of where the gallbladder is, describing how the surgery would remove the gallbladder.

04:57 All that would be helpful to try to aid in her understanding so that you can then assess her capacity.

05:04 So what we're going to do is watch the conversation between the physician and Ms. Smith.

05:08 And as you watch this, I want you to keep in mind, the mnemonic that we talked to about in terms of decision making capacity, the C-U-R-V, those are the four criteria for capacity in the larger mnemonic of curves.

05:24 So if you recall, the C is communicating a choice, U is understanding, R is reasoning or reasons and these values so, as you watch this, just see how she does in terms of covering these four criteria.

05:39 First, we'll see how the physician assesses her appreciation of the situation and how she applies her values to the treatment recommendation for the laparoscopic cholecystectomy.

05:51 What do you believe is wrong with you? I have stones that make me have pain when I eat, Do you believe you need treatment? Doctor says I need surgery to take the stones out.

06:01 What do you think the treatment will do for you? If I have surgery, then I won't get the pain.

06:06 What do you believe will happen if you are not treated? I could still get the pain but maybe not as often if I do not eat so many French fries.

06:15 Why do you think this treatment is recommended? Doctor does not want me to get sicker.

06:19 How does this recommendation fit with your values? I want to still be able to go to work and see my friends and I don't want my mom to worry.

06:28 Alright, so how did she do? So this is where we're going to summarize the conversation between the two of them, the questions that were asked her answers and see, did she appreciate the situation, and was there some mention of what her values are.

06:42 So she first of all, you know, recognize her diagnosis that she has stones.

06:46 Not saying that it's gall stones, but you know, she has an idea that there's a problem in her abdomen, that she needs surgery, so she understands that there's a treatment recommendation.

06:58 She understands the consequence of the natural history of having gall stones, that you know, she could get this pain again, if they're not taken out or gallbladder is not taken out.

07:08 And also that she could get sicker, you know, if she has a future gallstone attack.

07:13 And there is some mention of her values.

07:15 So she's saying she wants to be able to go to work, she wants to visit with her friends.

07:20 And she's also concerned about her mother and you know, her mother's concerned about her.

07:24 So all of these sort of speak to her values of.

07:28 She feels like she wants to do something about this.

07:31 So we're starting with a pretty good understanding of she appreciates the situation she's applying some of her values.

07:37 The next step in the process for the physician is going to be checking her understanding of the actual recommended treatment.

07:43 So in that conversation, the questions that were asked and the answers that she gave, we saw that she was able to describe what the indications for the surgery were that you know, there to take the stones out, that the benefits are that she's not going to get the pain.

07:59 And that you know, this is a way to try to prevent her from getting sicker.

08:04 Alright, so there's going to be more details we need to learn about the laparoscopic cholecystectomy, the risks involved, you know the alternatives to that.

08:12 So let's see how the physician asked about those things.

08:16 What treatment is recommended? They put a tube with a camera in my belly to cut out a sack near my liver.

08:23 Are there any other options for treating gall stones? They could do a surgery that cuts my belly open, but then I would have a bigger scar.

08:32 Any other options? I could not eat so many fried foods, but I would still have the stones inside my body and they might cause blockage someday.

08:41 What do you mean by blockage? The stone could prevent the liquid in my liver from draining into my guts and then I could get real sick.

08:51 What could happen if you got very sick? I might need to be in the hospital and maybe I could die.

08:57 Alright, so let's see what her understanding of the recommended treatment was.

09:01 So she first of all says that she's going to need to have the sack cut out near her liver.

09:08 Pretty decent description of what a gallbladder is.

09:11 So she understands what the recommended treatment is.

09:15 She understands that it involves an incision into her abdomen.

09:20 The alternative would be well if you restrict your fatty foods, maybe you won't get these gallbladder attacks.

09:26 So she understands something about the alternative treatments.

09:30 If it's the surgery, or you know, more involved surgery like an open cholecystectomy, she understands that there could be a bigger scar, she might get very sick, you know if there were complications from a gallstone blockage in her bile duct and that she might need to stay in the hospital longer.

09:51 So she's sort of appreciating additional risk associated with either the alternatives or complications.

09:59 Now let's see how the doctor asked her about the particular risks of the laparoscopic surgery.

10:05 So she's talked about the alternatives.

10:08 Where in this conversation, did they address the laparoscopic surgery? What are the risks of the surgery that is recommended? They might accidentally cut me on the inside.

10:18 What would happen then? They might need to do a bigger surgery and I might need to stay in the hospital to get antibiotics.

10:27 Any other risks? Well, it could be painful, especially after the surgery.

10:33 What could you do about the pain? During the surgery, the doctor will put me to sleep so I don't feel the pain.

10:40 After the surgery, my mom could give me pain medicine.

10:44 Are there any risks to the surgery? I could die but the doctor says there is a very small chance of that.

10:50 So what could happen with laparoscopy, while they might accidentally cut me on the inside.

10:54 So she's understanding the risk of the proposed surgery.

10:57 It might lead to a bigger surgery, and she might need to stay in the hospital longer.

11:01 There might be infection, she might need antibiotics.

11:03 So she's sort of understanding a few of these additional risks, as well as that surgery could be painful.

11:09 And you know, also that there's the possibility she could die.

11:12 She says, you know, very small chance of then that's what we're all going to hope for.

11:18 But she at least mentions that that is a possibility.

11:21 So she's got a good understanding of the risk of the proposed surgery.

11:25 Next, the doctors wanted to find out her understanding of the nature of the treatment, you know, what she's gonna go through what it requires, and also whether there are any potential longer term risks having this laparoscopic surgery.

11:39 What happens after you have the surgery? Doctor says I can go home the same day and sleep in my own bed.

11:46 Maybe I would have to stay in the hospital.

11:49 But my mom or dad could stay with me.

11:51 Are there any instructions for what you should do after the surgery? I should not go to work for at least a week.

11:58 And I would have to take it easy until I'm all better.

12:03 Anything you need to look out for after you recover? Well, the doctor says I should let them know if I get a fever or my belly starts hurting again.

12:11 Are there any long term side effects from the surgery? I could maybe get gas or diarrhea.

12:17 So I will have to watch what I eat.

12:19 And how did she do with this? So in checking her understanding of the recommended treatment, she says well, I can go home the same day, sort of same day surgery, she knows that she's not going to be able to work for a period of time, she's going to have to take it easy.

12:34 So he understands the nature of the proposed treatment.

12:37 And also that after surgery is going to have to watch what she eats.

12:43 She describes some of the longer term risks that she's going to have to watch out for that she doesn't get a fever or have any kind of recurrent abdominal pain that might suggest a complication from the surgery, and that there may be longer term risk of gas or diarrhea.

12:57 So again, she's got a good understanding of the longer term risks of the proposed treatment.

13:01 The other thing that the doctor is going to need to assess is her reasoning ability.

13:07 Let's see how that conversation unfolds.

13:10 So what do you think about the surgery? Well, it sounds kind of scary, because I've never had surgery before.

13:16 But I think I should do it.

13:18 Why do you think you should have the surgery? I don't want to keep getting sick every time I eat.

13:24 And the doctor says that taking the stones out will make the pain go away.

13:29 What do you think about the laparoscopic surgery, the operation that uses the tube with the camera? It sounds like that is a better surgery than making a big cut in my belly because with the tube, I would have smaller cuts and they could heal quicker.

13:45 And maybe I wouldn't have as much pain or need to be in the hospital.

13:50 So what is your decision about the surgery? I agree to have the surgery if my mom and dad agree.

13:56 Okay, so let's check her reasoning ability.

13:58 She is scared. I think that's natural.

14:01 Woman that's never had surgery before.

14:03 She's describing that it's scary.

14:06 You need to provide her support to help her through this fearful experience.

14:11 But hopefully get her through to the other side.

14:15 She says you know, I don't want to get sick every time I eat.

14:17 So she's sort of understanding that this is the indication for the surgery, the stones are going to be a way to try to prevent that.

14:23 So that's a good sense of reasoning through the options here.

14:29 And she understands that the laparoscopic surgery maybe involves smaller incisions, wouldn't have as much pain she wouldn't need to be in the hospital.

14:38 So she's taking in some of the information she learned about the particulars of the surgery and reasoning through those to come to a decision.

14:48 And in that conversation, we saw that, you know there were questions about whether she was communicating her choice and what did she do you want to do with regard to the physician's recommendation? And there it is. So what do you want to do, what do you think about the surgery? I think I should do it is what she says.

15:07 And lastly, you know, what is your decision? I agree to have the surgery.

15:12 So she's clearly communicated a choice.

15:15 Now, it's interesting to point out that she does add if my mom and dad agree, you know, so that raises the question of, is this a voluntary decision? In my mind, I would say yes, you know, she's demonstrated the ability to work through all of the information, reason about it, clearly demonstrate understanding of it, and communicate her own choice.

15:36 I think it's perfectly reasonable for a person to rely on loved ones for additional support and to get their input.

15:43 So it's sort of just assisting her as the decision maker.

15:48 And if her parents agree, then she can go ahead and proceed with the surgery that's recommended by the doctor.

15:54 So I hope this case, example has been helpful for you as thinking about these concepts of both informed consent and assessment of decision making capacity, and you'll be able to use these in the future with your patients.