But She's Always Been Such a Fighter

This is a video from the Pediatric End of Life Series from CS Mott Children's Hospital Pediatric Palliative Care Team. Other videos and materials from the collection are available at https://open.umich.edu/education/med/resources/palliative-care/2010.

This video is shared under a Creative Commons Attribution 3.0 License: http://creativecommons.org/licenses/by/3.0/

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[00:00:00.0]
[00:00:13.0]Father: Annie's pain is worse; I've had to hit the button 3 times in the last 30 minutes.
[00:00:19.0]Nurse: Okay, I'll call Dr.Kim. She's going to be here in a few minutes.
[00:00:23.0]Um, where's her pain at?
[00:00:25.0]Father: The left shoulder, that's been the part that's hardest to control.
[00:00:30.0]Laurie, now I'm a little worried that with all this pain medication
[00:00:34.0]she's getting in the last 2 days, won't that make her stop breathing.
[00:00:38.0]
[00:00:48.0]Nurse: That's a very common worry, when we use dilaudid in doses
[00:00:53.0]that control pain, breathing does almost always get easier,
[00:00:57.0]um, but you're right, in larger doses these medicines
[00:01:00.0]can decrease their drive to breathe, but it's been our experience,
[00:01:04.0]and the experience of our other doctors and nurses
[00:01:08.0]and even patients with cancer that, the benefit of good
[00:01:12.0]pain control outweighs the small risk,
[00:01:17.0]but we're going to continue to monitor her breathing and
[00:01:21.0]do our best to use the right amount of pain medicine for her.
[00:01:25.0]Now that could mean going up on doses.
[00:01:29.0]
[00:01:31.0]Doctor: Hi, Mr Strong?
[00:01:33.0]Father: Yes
[00:01:34.0]Doctor: Hey, I'm Doctor Kim the night resident.
[00:01:36.0]Father: Doctor Kim, nice to meet you
[00:01:39.0]Doctor: So I haven't gotten to know Annie very well yet, but I'll be on tonight
[00:01:43.0]and for the next two nights, I've also had the chance to talk with Dr.Henderson about her situation,
[00:01:47.0]how's she doing this evening?
[00:01:50.0]Father: Well she's moaning more in the last two hours, this afternoon
[00:01:54.0]she got three hours of good sleep.
[00:01:57.0]Doctor: Where is she hurting tonight?
[00:01:59.0]Father: It's her left shoulder, that's been the part where the tumor is growing the fastest.
[00:02:04.0]Doctor: Hi Annie, I'm Doctor Kim, I'm going to touch you very gently on your
[00:02:08.0]arms and legs, tell me where it hurts okay?
[00:02:13.0]
[00:02:19.0]Doctor: Does it hurt to move your arm?
[00:02:21.0]Annie: It hurts a little on my right shoulder, but that goes away when I hit the button,
[00:02:25.0]my left shoulder hurts a little, but not when you touch it.
[00:02:29.0]Doctor: How's your tummy tonight?
[00:02:30.0]Annie: I don't wanna throw up anymore.
[00:02:33.0]Doctor (to nurse): Did she have a bowel movement today?
[00:02:35.0]Nurse: She did, she had a soft one this afternoon.
[00:02:38.0]Doctor (to Annie): Do you feel like you need to throw up right now?
[00:02:41.0]Annie: Not right now.
[00:02:42.0]
[00:02:45.0]Doctor: Okay, so, looks like she's getting 600 micrograms of hydromorphone continuously,
[00:02:49.0]then another 600 every time she pushes the button,
[00:02:53.0]and she's pushed the button 3 times in the past 30 minutes and is still having pain.
[00:02:58.0]Doctor: Annie, have you been giving your pain a number like 10 when it's really big
[00:03:01.0]or two or three if it's just a little bit?
[00:03:03.0]Annie: It's around a six or seven.
[00:03:06.0]Nurse (to doctor): What are you thinking for the pain?
[00:03:08.0]
[00:03:16.0]Nurse (to doctor): What are you thinking for the pain?
[00:03:19.0]Doctor: I talked with the pain nurse about this earlier,
[00:03:23.0]let's give her 900 micrograms of hydromorphone right now,
[00:03:27.0]let's also go up on her continuous rate by about 25 percent to 750 micrograms,
[00:03:31.0]we can also increase the amount that she gets with each push button,
[00:03:36.0]by about 25% and take that to about 750 micrograms as well.
[00:03:41.0]Nurse: Okay
[00:03:42.0]Doctor: We can also decrease the interval between the doses from 8 minutes to 5 minutes
[00:03:47.0]so that she gets it more frequently. How does that sound?
[00:03:52.0]Dad:âŚ.You're the doctor.
[00:03:54.0]Doctor: Alright, well let's see how the next couple of hours go as I'll be back to check on her,
[00:03:58.0]I'm gonna go put those orders in, Laurie can you change the pump for me?
[00:04:01.0]Nurse: Yup. Absolutely.
[00:04:03.0]
[00:04:16.0]Father: Well Doc, her pain is good, her breathing's fine but twenty minutes ago she started puking again.
[00:04:23.0]Nurse: And I've already given her the ondansetron and the lorazepam
[00:04:27.0]both IV, and they've been in for over 10 minutes now.
[00:04:32.0]Father: What do we do now?
[00:04:34.0]
[00:04:43.0]Father: What do we do now?
[00:04:45.0]
[00:04:47.0]Doctor: Looks like a bit of mucus, nothing colored, Annie,
[00:04:50.0]is your tummy hurting worse now?
[00:04:57.0]I'm going to listen.
[00:05:00.0]
[00:05:08.0]Doctor: Well, there's no reason to expect obstruction, her belly's nice and soft
[00:05:12.0]and the sounds are all normal, and she had that bowel movement earlier.
[00:05:17.0]Some children get nausea and vomiting when we have to use these strong pain medications,
[00:05:22.0]or this could be the same nausea and vomiting from her tumor.
[00:05:27.0]I'd like to try a new medication called haloperidol.
[00:05:31.0]It will likely make her vomiting go down and make her a little sleepy too.
[00:05:36.0]If that doesn't work, we can always get an x-ray and see if something else is going on.
[00:05:40.0]I'll call oncology, let them know that we're going to start something new
[00:05:44.0]and see if they have any ideas.
[00:05:47.0]Doctor: I'll go put those orders in right now, it should be up shortly.
[00:05:52.0]
[00:06:02.0]*Phone rings*
[00:06:05.0]Doctor: Hey, this is Doctor Kim,
[00:06:07.0]Laurie on phone: Hi, I wanted to let you know that the haloperidol worked. She went to sleep
[00:06:11.0]within about 10 minutes. And dad's drifted off in the chair next to her
[00:06:15.0]so I'll just call you if anything else changes.
[00:06:18.0]Doctor: thanks Laurie!
[00:06:20.0]
[00:06:23.0]Doctor: Hey Laurie!
[00:06:25.0]Nurse: Hey
[00:06:26.0]Doctor: So, according to my sign out, Annie had a better night, her pain was under better control, and
[00:06:31.0]they didn't have to turn her PCA up anymore.
[00:06:33.0]Nurse: No, they kept her on the haloperidol every 6 hours, and she didn't throw up
[00:06:37.0]again, she's been more sleepy than she was before, but she's comfortable,
[00:06:41.0]she'll open her eyes every now and then. Mom's here now,
[00:06:46.0]dad went to put the kids to bed at home and then he'll be back, the
[00:06:50.0]oncology team came by, today, around 5:30 this evening, and
[00:06:54.0]reinforced with them that our total focus is on comfort, and
[00:06:58.0]then the oncology attending talked to them as well and
[00:07:02.0]told them that, continuing to draw her labs and transfuse her
[00:07:07.0]might get her a few more hours or days, but that it wouldn't really make her feel any better.
[00:07:13.0]Doctor: How'd they respond to that?
[00:07:15.0]Nurse: They had agreed. He said that all the family came in this weekend
[00:07:19.0]and they got to see Annie when she was alert and talkative, and
[00:07:23.0]then the priest came by in the evening and did some kind of ceremony.
[00:07:28.0]I think that dad is ready, he only lives about 20 minutes away
[00:07:32.0]but mom, she expresses more sadness when dad's not here
[00:07:37.0]and she's been more tearful and quiet than before.
[00:07:42.0]Doctor: I should go in and meet her
[00:07:44.0]
[00:07:47.0](Knock on door)
[00:07:49.0]
[00:07:50.0]Doctor: Hi, Ms. Strong?
[00:07:51.0]Mother: Yeah.
[00:07:51.15]Doctor: Hey, I'm Doctor Kim, the night resident.
[00:07:54.00]I've only gotten to know Annie a little bit over the last couple of nights, but she seems to be a
[00:07:59.00]really nice little girl. She's really been able to tell me what's bothering her;
[00:08:03.00]more-so than other 10 year olds.
[00:08:06.00]Mother: She's always been a fighter. Doctor, I...I know that we've
[00:08:10.00]been told that a blood transfusion won't help, but
[00:08:14.00]what if she starts to bleed? From low platelets?
[00:08:18.00]
[00:08:27.00]Mother: What if she starts to bleed? From low platelets?
[00:08:31.00]Doctor: Ah, yes- I talked to Dr. Henderson about this earlier, and, uh,
[00:08:35.00]he told me that you and Annie's dad wanted to make her as
[00:08:39.00]comfortable as possible; for her to be treated less like a patient,
[00:08:43.00]and more like she would if she were home, with as few
[00:08:47.00]IV medications and pumps as possible.
[00:08:51.00]Have you changed your mind about that?
[00:08:52.00]Mother: No, not really. It just scares me to think of her bleeding to death.
[00:08:57.00]Nurse: And that's understandable. If she doesn't vomit,
[00:09:01.00]the risk of her bleeding, even with her low platelets isn't very high.
[00:09:05.00]And the last time she had blood product she had significant shivering chills.
[00:09:10.00]Doctor: Thanks Laurie. That's important for us to remember.
[00:09:14.00]While I don't think that bleeding will happen, I'll make
[00:09:18.00]sure that we have platelets on standby in case we need to use them to make Annie feel more comfortable.
[00:09:23.00]
[00:09:28.00]Doctor: Hey!
[00:09:29.00]Nurse: Hey.
[00:09:30.00]Doctor: Since I didn't get any pages, I'm guessing everything went okay for the rest of the night?
[00:09:35.00]Nurse: Yeah, Annie opened her eyes a few times and she smiled.
[00:09:39.00]Um, I went ahead and turned all the monitors off. Uh, her heart rate's a little faster than it was this
[00:09:43.00]morning. And it's a little thready. Um, but I didn't turn her blood pressure off.
[00:09:48.00]Doctor: Yeah, it's been 4 days since her last PCRB transfusion- her hemoglobin's
[00:09:52.00]probably less than 7 by now.
[00:09:54.00]Nurse: Yeah. You know, mom asked if we should've stopped the TPN that she was getting
[00:09:58.00]when she was in PICU.
[00:10:00.00]Doctor: What'd you say to that?
[00:10:01.15]
[00:10:10.00]Doctor: What'd you say to that?
[00:10:12.00]Nurse: I just told her that, in advanced cancers that the nutrition
[00:10:16.00]generally goes to feed the tumor, and that's why they lose their appetite,
[00:10:20.00] at least until they start the steroids.
[00:10:23.00]Doctor: That's a good answer! I'll have to remember that for next time.
[00:10:26.00]Nurse: And besides, all that extra fluid, that close to end of life- will likely cause other
[00:10:30.00]problems like swelling and difficulty breathing, and...and I told mom that too.
[00:10:35.00]Doctor: Yeah. Do you think Annie will make it through another day?
[00:10:40.00]Nurse: I don't know. She's always full of surprises. I mean,
[00:10:44.00]last week, we didn't even think she was going to make it out of PICU.
[00:10:47.00]Nurse: Are you on tonight?
[00:10:48.00]Dr.Kim: Yep. Last night of four in a row. How about you?
[00:10:51.00]Nurse: Yeah, one more 12-hour shift. So...I guess
[00:10:55.00]I'll see ya tonight. Get some sleep.
[00:10:56.00]Doctor: Yep. See ya.
[00:10:58.00]
[00:11:11.00]Doctor: Hey. Hey Annie, it's Doctor Kim.
[00:11:14.00]
[00:11:18.00]How's everything going tonight? Is there anything you need?
[00:11:23.00]Father: She's comfortable tonight. She opened her eyes late this afternoon.
[00:11:28.00]Uh, she hasn't thrown up since she started that other
[00:11:32.00]'H-medicine', and we haven't had to hit the PCA button at all.
[00:11:39.00]Mother: Doctor, do you think that since she's needing less medicine that maybe she's getting better?
[00:11:44.00]
[00:11:53.00]Mother: Doctor, do you think that since she's needing less medicine that maybe she's getting better?
[00:11:58.00]Doctor: I've always been told what a fighter she is.
[00:12:02.00]Nurse: (sigh) So (clears throat),
[00:12:06.00]sometimes kids that fight,
[00:12:10.00]and especially kids as smart and sensitive as Annie,
[00:12:15.00]sometimes they need to hear from their parents
[00:12:20.00]that it's okay not to fight anymore.
[00:12:24.00]That you'll be okay, that you guys will be okay.
[00:12:29.00]
[00:12:35.00]Mr. Strong: Can you give us a little time, alone?
[00:12:39.00]Nurse: Absolutely. I'll be close by. I'll just be outside.
[00:12:41.00]
[00:12:52.00]Mother: Annie, honey? Mommy and Daddy love you very, very much.
[00:12:57.00]And you don't have to fight anymore.
[00:13:01.00]We'll always be with you. You'll always be with us.
[00:13:09.00]You'll always be in our hearts, and it's okay- we'll be okay.
[00:13:13.00]Okay? We love you.
[00:13:18.00]
[00:13:51.00]Father: She's gone. It was very peaceful. Thank you so much.
[00:14:00.00]Nurse: Sorry.
[00:14:02.00]