Tell Mom I'm Not Afraid to Die: Adolescent With End-Stage Cystic Fibrosis

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]
[00:00:16.0]Doctor 1: Hi, Dr. B!
[00:00:18.0]Doctor 2: Hi, so I just came from Erica's room,
[00:00:23.0]she appears more comfortable and her mom and her brother are there, she uh,
[00:00:27.0]look a little bit more dyspneic, I wouldn't be surprised if her CO2s
[00:00:33.0]are in the seventies, but I think that since we started the morphine PCA this afternoon,
[00:00:37.0]she's more comfortable, so it seemed to be-when she-when we pressed-after
[00:00:41.0]we pressed the button, she got some relief in three or four minutes
[00:00:45.0]Doctor 1: Okay, and do you think that she seems to know that the end might be near?
[00:00:49.0]Doctor 2: Yeah, I told the family that I thought the end was close,
[00:00:53.0]but it's hard to tell. Maybe a day or so, unless a mucus plug
[00:00:57.0]gets her before that.
[00:01:01.0]Uh, they're in a much better place now
[00:01:05.0]than they were a couple days ago when they finally started talking about death,
[00:01:09.0]and I've encouraged them to talk about good times and the things that are important
[00:01:12.0]Doctor 1: Sounds good. Do you think that we should be continuing our current treatments,
[00:01:16.0]I mean we've got breathing treatments, we've got Pulmozyme, the antibiotics?
[00:01:23.0]
[00:01:31.0]Doctor 1: Do you think that we should be continuing our current treatments? I mean we've got breathing treatments,
[00:01:35.0]we've got Pulmozyme, the antibiotics?
[00:01:40.0]Doctor 2: Yeah, I told the family at our last meeting that we'd continue everything
[00:01:45.0]unless it was making her uncomfortable, so at this point I'd consider the inhaled medications.
[00:01:49.0] If they're bothering her, then you can stop them.
[00:01:53.0]As far as the antibiotics, they're not really helping,
[00:01:57.0]but there isn't a whole lot of harm either.
[00:02:00.0]If she loses consciousness, toward the end, you can stop them.
[00:02:03.0]Nurse: You know, knowing Erica, she'd probably tell you,
[00:02:06.0]"Just save the antibiotics and use them for someone else".
[00:02:09.0]Doctor 2: You may be right. Sandy, why don't you come with me and
[00:02:13.0] I'll introduce you to the family and let them know that I trust you
[00:02:17.0]and that you'll call me with any problems.
[00:02:22.0]Patient: (On phone) I know right? That's what I thought.
[00:02:26.0]We'll see. I've gotta go, I'll talk to you later.
[00:02:31.0]Doctor 2: Hi Erica, how are you feeling?
[00:02:34.0]You know Dr. Saunders, she's... she'll be the resident here tonight.
[00:02:38.0] Her job is to make you comfortable. How's the morphine PCA working?
[00:02:42.0]Patient: Uh, it helped, I think. I hit the button a couple of minutes ago and it helped.
[00:02:47.0]Mother: How many times can she hit it, I mean too much morphine wouldn't be good, would it?
[00:02:53.0]
[00:03:00.0]Mother: How many times can she hit it, I mean too much morphine wouldn't be good, would it?
[00:03:04.0]Doctor 2: Well, that's a really good question.
[00:03:08.0]Erica, the morphine right now is being delivered through a pump.
[00:03:12.0] It's being given a little bit continuously all the time.
[00:03:16.0]And it's not enough to make you sleepy, but it's the best medicine we have
[00:03:20.0]that can help take away this feeling that you can't breathe.
[00:03:24.0]Additionally, you have the button you can push
[00:03:29.0]and it gives you a little bit more medicine over a few seconds.
[00:03:32.0]That'll help take that feeling away as well.
[00:03:35.0]It's the best thing we have and
[00:03:39.0]most people who have advanced lung disease get some relief from it.
[00:03:45.0]As long as you're awake enough to push the button,
[00:03:48.0]it's not gonna make you sleepy so you stop breathing.
[00:03:51.0]Patient: Ok, I am getting pretty tired, though.
[00:03:54.0]Is there anything else you could try that won't make me sleepy?
[00:03:57.0]
[00:04:05.0]Patient: Is there anything else you could try that won't make me sleepy?
[00:04:08.0]Nurse: You know, we can try a fan, that might help the breathing a little bit.
[00:04:13.0]We could have you sit up or go in a chair or you can lean over your tray
[00:04:18.0]Doctor 1: We had a patient last year who we tried inhaled fentanyl with,
[00:04:24.0]maybe we could give that a try?
[00:04:26.0]Doctor 2: Yeah, that... that's reasonable.
[00:04:29.0] I don't know if that's proven that it works in every case,
[00:04:32.0]but it's definitely worth trying.
[00:04:35.0]The side effects are relatively safe and it might have some benefit,
[00:04:39.0]so it would be worth doing.
[00:04:40.0]Mother: I'd like to try all of them, I mean wouldn't you, honey?
[00:04:44.0]Patient: Sounds good to me
[00:04:46.0]Doctor 1: Ok well I'll just write an order and let the respiratory therapist know
[00:04:49.0]that we would like that treatment then
[00:04:51.0]and I just want to let you know that I am the one who's here overnight all night long
[00:04:55.0]so anything comes up, Jane can page me, I'll be right here.
[00:05:00.0]Doctor: Erica, I'm gonna be leaving the hospital in the next half hour or so,
[00:05:04.0] I trust Jane and Dr. Saunders to take care of you tonight,
[00:05:07.0] if you need anything, let them know.
[00:05:10.0]And I'll check with them a little later this evening
[00:05:12.0]Nurse: And the antibiotics?
[00:05:14.0]Doctor 2: Thanks for reminding me, Jane.
[00:05:16.0]Erica, do you know at the family meeting we talked about
[00:05:19.0]how the antibiotics aren't really doing what we had hoped they were gonna be doing?
[00:05:23.0] And after this long course of infection... after this long course of treatment,
[00:05:27.0]there really-at this point... the risk of the antibiotics outweighs the benefits.
[00:05:32.0]And so if you'd like to stop them, it would be reasonable at this time
[00:05:37.0]Patient: You know me, Dr. B, I never was that big on taking medications anyway.
[00:05:41.0] I'd rather you stop them.
[00:05:43.0]Mother: Wait I-I-I don't wanna stop anything at this point
[00:05:46.0] that might be helping I mean even if just a little.
[00:05:49.0]
[00:05:56.0]Mother: "I don't wanna stop anything at this point
[00:05:59.0]that might be helping I mean even if just a little"
[00:06:01.0]Doctor 2: Yeah, Ms. H, I understand.
[00:06:04.0]You wanna do everything you can, even if it may only help a little bit.
[00:06:09.0]At this point, the risk slightly outweigh the benefits
[00:06:13.0]and after this long course of therapy I think it's important to listen to Erica
[00:06:17.0]and let her help us guide what we're gonna do.
[00:06:21.0]Like in determining what is important.
[00:06:25.0]Mother: What do you think, Erica?
[00:06:27.0]Patient: Well, let's see how I feel before my next dose, okay Mom?
[00:06:31.0]Mother: Okay...
[00:06:32.0]Nurse: Okay, what else can I get you guys?
[00:06:34.0]Patient: I'd kinda like a mango smoothie.
[00:06:38.0]Nurse: (laughs) All right, I'll see if I have the ingredients to make that for you.
[00:06:42.0]And in the meantime, uh, are you expecting anyone else?
[00:06:47.0]Mother: Uh... I-I don't think so.
[00:06:50.0]Jason just went back to the Ronald McDonald house to get his iPod,
[00:06:53.0]he should be back in a little while.
[00:06:55.0]Grandma and Grandpa were here this afternoon,
[00:06:57.0]they'll be back here in the morning.
[00:06:59.0]Nurse: Right. I'll be back.
[00:07:03.0]
[00:07:12.0]Nurse: All right, how's the smoothie?
[00:07:16.0]Patient: It's not bad, but Jason makes better ones at home.
[00:07:20.0]Jason: Yeah, you liked the one I said had vodka in it, but it didn't.
[00:07:24.0]Patient: Mom would've killed you if that were true.
[00:07:27.0]Nurse: Where is your mom?
[00:07:29.0]Jason: She went to call somebody,
[00:07:31.0]she's having a really hard time with this.
[00:07:34.0]Patient: It's harder on her I think than it is on me.
[00:07:37.0](sighs) I'm just tired of being here, tired of being sick,
[00:07:41.0]tired of being a patient.
[00:07:44.0]Nurse: What can we do to help your mom?
[00:07:47.0]Jason: I don't know, she's still having a really tough time with this,
[00:07:51.0]but I think she'll be okay.
[00:07:54.0]Nurse: Who does she have to lean on and to talk to well other than you?
[00:07:58.0]Jason: She has lots of friends. She has my grandma too.
[00:08:03.0]Grandma gets... this. She's pretty tough.
[00:08:09.0]Uh, but, I think she'll still be okay.
[00:08:16.0]What do you think?
[00:08:18.0]Patient: She thinks my being sick is her fault.
[00:08:20.0] But I always tell her to blame my dad.
[00:08:24.0]Nurse: What's his story?
[00:08:26.0]Patient: Well... He took off when I was 2, and we never heard from him again.
[00:08:30.0]Grandpa says he moved to Canada, but I don't even remember him.
[00:08:34.0]Mom threw away all his pictures.
[00:08:36.0]Patient: (coughs) Jeannie?
[00:08:40.0]Nurse: What honey?
[00:08:42.0]Patient: Can I try some of that inhaled breathing medicine?
[00:08:45.0]Nurse: Oh, sure, sure, we'll get it right here.
[00:08:47.0]Umm, Barb, the-the RT, she's right down the hall next door.
[00:08:52.0]Let me grab her.
[00:08:58.0]Nurse: Barb? Could you come come in here for Erica
[00:09:02.0]and get her that Ventolin NMT? Thanks.
[00:09:07.0]
[00:09:30.0]Doctor 1: Hi Erica, how are you feeling? Did that help at all?
[00:09:35.0]Patient: I think it maybe helped a little.
[00:09:38.0]Nurse 2: Hey doc, umm, before and after the treatment her sats were in the low 80s.
[00:09:42.0]Would you like to change to a Venturi mask?
[00:09:46.0]
[00:09:54.0]Nurse 2: Before and after the treatment her sats were in the low 80s.
[00:09:58.0]Would you like to change to a Venturi mask?
[00:10:02.0]Doctor 2: Well Erica, what do you think about that?
[00:10:05.0]Do you want to stick with the cannula or do you want to try a mask?
[00:10:08.0]Patient: Not the mask.
[00:10:09.0]Doctor 1: Okay, I think we can just go ahead and adjust the flow to her comfort.
[00:10:13.0]Umm, there is probably some other things that we can do
[00:10:17.0]to help you feel a little bit more comfortable.
[00:10:19.0]So we've got several things we're going right now;
[00:10:21.0]we've got the morphine if we need it,
[00:10:23.0]we've got the breathing treatment, this oxygen here.
[00:10:26.0]But you're clipped to a lot of different things here,
[00:10:29.0]and I think that we can go ahead and take these off of you
[00:10:32.0]and stop watching the numbers on the screen instead of looking at you
[00:10:36.0]and you just tell us how you feel.
[00:10:40.0]Mother: Honey, you tell us how you feel, we'll be right here.
[00:10:45.0]Nurse: Erica how's that fan feeling? It's okay?
[00:10:48.0]Patient: Yeah.
[00:10:49.0]Nurse: Okay, you want me to bring it closer?
[00:10:51.0]Patient: Mhmm.
[00:10:52.0]Nurse: All right, you let me know what you need.
[00:10:55.0]
[00:11:14.0]Patient: Mom? Mom, where is my pink sweatshirt?
[00:11:18.0]
[00:11:21.0]Mom can you call Mrs. Oster and tell her I finished my homework?
[00:11:25.0]Mom, where are my sunglasses?
[00:11:28.0]Mother: Why is she talking like this? She looks so agitated. Can you help her?
[00:11:32.0]
[00:11:39.0]Mother: She looks so agitated. Can you help her?
[00:11:42.0]Doctor 1: She does look agitated.
[00:11:45.0]You know we, we tend to see patients looking like this as the end times approach.
[00:11:49.0]You're doing all the most important things: you're holding her hand,
[00:11:53.0]you're showing her that you're here for her, reassuring her.
[00:11:57.0]Those are the most important things for her right now.
[00:12:00.0]I think there's probably a medication that we could try
[00:12:04.0]to see if that'll help a little bit too called lorazepam.
[00:12:07.0]I'm just gonna run out and get the nurse and we'll get that right away.
[00:12:11.0]
[00:12:17.0]Doctor 1: Yeah... yeah, okay well just go ahead and give the Tylenol
[00:12:21.0]and then give me a call back in probably about an hour
[00:12:24.0]if you think that that hasn't made a difference.
[00:12:27.0]Okay, thanks.
[00:12:29.0]Doctor 1: Hi.
[00:12:30.0]Nurse: Hi.
[00:12:31.0]Doctor 1: How's Erica and her mom doing now?
[00:12:33.0]Nurse: Well... The lorazepam helped.
[00:12:37.0]She's sleeping, you know, still coughing on and off.
[00:12:41.0]Uh, we do at this point have to shake her in order to wake her up.
[00:12:45.0]Umm, breathing's about the same just below 40, same retractions.
[00:12:51.0]Umm, she did have one episode of apnea lasted about... 10 seconds?
[00:12:56.0]And I thought her mom was just going to lose it, but she didn't-she didn't.
[00:13:01.0]She uh, actually really surprised me and was calm.
[00:13:05.0]Um, more teary, not as hyper;
[00:13:09.0] I think Jason has a calming influence on her.
[00:13:12.0]Doctor 1: Do you think Erica's gonna make it through the night?
[00:13:15.0]Nurse: I wouldn't be surprised if she didn't.
[00:13:18.0]Doctor 1: Have you ever had a patient die on the wards before?
[00:13:21.0]What else do we have to do?
[00:13:23.0]
[00:13:30.0]Doctor 1: What else do we have to do?
[00:13:33.0]Nurse: Well... there is a file.
[00:13:36.0]Um, some paperwork that you're gonna need to fill out and sign,
[00:13:39.0]the clerks keep it behind their desk in a cabinet.
[00:13:47.0]Doctor 1: Hey look, Dr. B. mentioned to me that
[00:13:49.0]the patient's family doesn't want the autopsy.
[00:13:54.0]But he also said that Erica wanted to donate any part of her body
[00:13:57.0]that may help someone else.
[00:14:00.0]Nurse: Okay, so there is a piece of paper in here
[00:14:04.0]that has the gift of life phone number on it.
[00:14:07.0]So what you could do is you could call that now tell them the situation.
[00:14:11.0]They'll tell you the next steps, and then once Erica passes
[00:14:15.0]at that point um we get consent, permission from the family,
[00:14:19.0]call again and they will tell the family the next steps.
[00:14:23.0]Doctor 1: And do you think that would be a conversation
[00:14:26.0]that would be better had before she passes or after?
[00:14:30.0]Nurse: You know they've-they've already discussed it,
[00:14:33.0]so I think it's okay to wait until after she's gone.
[00:14:36.0]Doctor 1: Okay. Do you think that the family would want the chaplain to come back?
[00:14:40.0]Nurse: I don't know... Um let me, let me talk to them about that
[00:14:44.0]and see who else they'd want to have here.
[00:14:47.0]Doctor 1: Okay. Well I'm gonna give Dr. B. a call
[00:14:49.0]and kinda let him know where we're headed.
[00:14:51.0]Nurse: Yeah, good idea. Okay.
[00:14:55.0]
[00:15:06.0]Mother: She seemed more comfortable since midnight.
[00:15:12.0]She said "I love you" to me and to her brother.
[00:15:18.0]She hasn't been awake for over a half hour though.
[00:15:25.0]This is really hard.
[00:15:30.0]Don't you think we should try the BiPAP again?
[00:15:33.0]
[00:15:40.0]Mother: Don't you think we should try the BiPAP again?
[00:15:44.0]Doctor 1: You know I did ask Dr. B. if there was anything
[00:15:47.0]that we could do to help her hang on until the morning,
[00:15:50.0]but he said that her lungs are so far gone.
[00:15:53.0]And of course, remember how uncomfortable she was
[00:15:57.0]when we put the BiPAP on her?
[00:15:59.0] I mean, we could always put her on a ventilator, take her to the ICU.
[00:16:03.0]Those things probably would get her through till the morning,
[00:16:06.0] but they wouldn't help her lungs to heal at all.
[00:16:10.0]And it would just make her uncomfortable.
[00:16:13.0]This is just such a terrible disease,
[00:16:15.0]but from what you say and from what Jason says
[00:16:18.0]it doesn't sound like it ever slowed her down.
[00:16:21.0]Jason: Yeah, she went bowling just three weeks ago
[00:16:24.0]and got four strikes in a game.
[00:16:27.0]But you know she wouldn't want the BiPAP again, Mom.
[00:16:35.0]Mother: This is still just so much harder than I thought it would be.
[00:16:37.0]
[00:17:21.0]Doctor 1: I'm so very sorry.
[00:17:23.0]Jane, let's record the time of death as 2:54 am.
[00:17:26.0]Nurse: Okay.
[00:17:29.0]