A palliative care doctor on finding a “good death” for children in the worst situations.
A palliative care doctor on finding a “good death” for children in the worst situations.
new video loaded:Dying in Your Mother’s Arms
transcript
Dying in Your Mother’s Arms
A palliative care doctor on finding a “good death” for children in the worst situations.
[QUIET MUSIC] I got a consult in the neonatal intensive care unit on a baby who had been there for almost a year in a kind of common story with multiple problems. And this doctor looked at me and said, “We don’t think the parents understand how serious things are.” And I said, “OK. Well, how serious are they?” And he was like, “Well, Evie’s got all these problems.” And I was like, “So what do you think might happen?” And like, honestly, this baby might not ever make it home. And I say, “So you think the baby’s going to die.” And he right away was like, “No, that’s not what I said.” And I’m not trying to be funny, but I was like, “Do you think the baby’s going to live here for the next 20 years?” He was taken aback and, well, “I guess if you say it that way then, yeah, we’re worried about that.” I said, “Do you think that maybe the reason the family is confused about how serious it is, is that you can’t even say it.” We’re in that awkward place where he may get better. He had some big fevers today, so it’s a little hard for me to imagine. At some point, what I suspect will happen is he’ll kind of start giving up the fight a little bit. And then we might see his heart rate starts slowing. And that’s when, for me, that I would say maybe he has only minutes to hours. I think the process can be incredibly scary. Can be very chaotic. I think when you’re fearless about this thing, that is dying, people cling to you, and you’re a source of calmness and strength. [CAR ALARM BEEPS] So how you been doing? I’m doing OK. You’re doing OK? Yes. She’s smiling? Yes, all the time. Oh, good. She’s sleeping a lot. [EXHALES] A lot. Excessive sleeping. She’ll sleep. And then she’ll wake up at 3:00 in the morning, like making noise and pulling my hair and all of that. And then she’ll go to sleep, and she’ll sleep the entire day.” [BABY FUSSES] Oh, I know. It’s my cold hands. Just watching her a little bit breathe, like, she breathes real, real, real — Light. Like, light. Mm-hmm. But that’s her norm? Yeah, that’s normal for her. Even though this pattern of breathing is her norm, it’s a little concerning, but it’s keeping her going. It just makes it hard to — kind of like, how long can you go like this? Right. It’s not a normal pattern in the way that she’s breathing. And so, you know, I think we gotta kind of make a plan. I think if we don’t intervene — she’s calm, she’s comfortable, she’s still giving you smiles but just for a short period of time. And I think that will continue. But my guess is she may only have days or weeks to live. And I think that’s a real possibility unless something turns around. She doesn’t show signs to me of a cold or a virus. A lot of times — [SNIFFLING] It’s hard. You’re good. And I’m guessing you kin of were feeling something, like you’re worried. (WHISPERING) Oh, she’s got a little smile. I’m sorry. It’s OK. It’s a lot. Here you go. You’re a good mom. Thank you. I’m sorry that I had to come out and [INAUDIBLE]. I prayed really hard that she would come home, so I’m really grateful for the time more than anything. [SNIFFLES] She’s a strong baby. No question. You’re a strong mom. [QUIET MUSIC] Everybody kind of says that losing a child is the worst thing that could happen. Palliative care perspective often is finding good choices when everything seems bad. And if I start with the ability to find good choices when I’m dealing with children dying, which most people say is the worst bad that could be, and I can find good, then we all can find good. I have a patient at home in hospice care who appears to be nearing dying. And the mom really doesn’t want him to die at home, so I’m trying to explore other options to see if we have any space. A lot of what I do with these patients — and I’m trying to — I tell them, I’m trying to de-medicalize death. I’m trying to humanize it. And I think most people would want — they don’t want a medical death. They want a human death. I hear a lot, like, things like the family’s not ready or the doctors will kind of be like, well, we’re not consulting you because they’re not ready. And I think that this is almost always an error. I always feel like if we wait until a family has very clearly become ready to talk to me, that we’ve woefully failed this family. Do you have a name? Are you not worried? - Yes. You do have a name? Do you want to share it? Or you’re not — Um, Giovanni. Giovanni? Yes. Oh, I’m an Italian. I like it. [CHUCKLES] So if Giovanni is born alive, they will call the pediatricians in just to kind of be available cause we don’t always know exactly what’s going to happen. OK. Given all the things you’ve been told about the baby, what are the things you’re most worried about? That, um, I don’t know, I just — I’m really kind of neutral to it. I’m just trying not to feel it because it’s still, every day, he’s still moving. And I go to the appointments, and he’s still having natural heartbeats and everything. So ... So trying to kind of not get too attached. Right. And I think you’re already trying to protect yourself. You don’t want to fall in love. Yes. And the more you fall in love, the more it’ll hurt. I think we take it a little different. We’re not going to force you, but we also kind of see it like, the more you fall in love, that means the more his life had meaning. And he had an impact. And so we’re also here — so gosh, if he gets home, we’ll be all about getting you pictures and cuddles and everything that we can. OK. And as a team, we’re not really afraid of these things. Does that make some sense? It does. It’s so rare that I see doctors able to describe the positive as to why we might want to talk about this and why we think planned dying is good. I do think that deep down for many doctors, they are thinking about, like, the quality of death, and they’re worried that this child might die in a scary, unpredictable way and with families not being prepared emotionally, psychologically, spiritually. And they want to get people into that place, but they’re not explaining to them that that’s like — now what we’re starting to think of is we want to plan a better death. And we’ve seen the bad deaths, and we want to give you a good death. Yeah. Are you doing OK? It’s been hard. Yep. I know that they took him off the heart transplant list, but I didn’t know, like, if you felt like at any point you wanted to sit down and meet or talk about what the next steps are, because there’s like the day to day, and then there’s the big plan. Yeah. I would like to know but right now — Focusing on getting him a little better from this. Well, I hope he can continue to wake up. I totally agree with what the doctors recommended. He will wake up. And he will get better. That’s right. I’m a terrible... I’ve seen patients slowly dying for months on a ventilator, half a year on a ventilator. The most frustrating thing, I think, is when we’re putting in a breathing tube and we are not going to be able to take the breathing tube out. They’re always — they’re not going to live without it. But with the tube in place, they are stable for a period of time. With the tube in place, we can breathe for them on the ventilator, and we can tweak things, and we can adjust things, but we can’t get the tube out. And they’re still going to die. I think if you were to poll most physicians, they would tell you they would not want to be kept alive on machines. They would not want extraordinary measures to be taken. They don’t have that knowledge, when you’re trying explain this to families. They don’t understand really what they’re going to be doing, what they’re taking on. If you have just a lung problem, you just need a lung doctor. But if you have a lung problem that’s affecting your kidneys, and your kidneys are now affecting your heart, and your heart is affecting this, and then you have these doctors — that’s when you start having some challenges. So who’s looking at everything? And I look at all these doctors. They’re all trying so diligently. And then me, sometimes I kind of come in and the overall picture is things are getting harder. And they have a problem often that is — the big, causative problem is unfixable. And so we’re just trying to fix all the symptoms, but if you can’t fix that big problem, it’s going to come. I started out with one doctor, and I think he left. So after that, I’ve had four or five different doctors that I’ve seen. I mean, I know that I have a sick baby, but they — it’s just so impersonal because the questions that they ask, and it’s just so quick, fast, and they have so many other patients to see. Morning, how are you? Good, how are you? I’m good. How’s it going today? It’s going OK. [BEEPING] How’s the baby moving? He’s moving good. Cramping? No cramps. Contractions? Yes, a lot. A lot? Yeah. Well, it’s pretty often. OK. But it’s not painful. Yeah, and not consistent? So you know that’s normal. You’ve had babies before. So contractions here and there are perfectly fine. Any leakage of fluid, like your water broke? No. Bleeding from the vagina? No. Perfect. So we’re at 38 weeks and four days now. I talked to Dr. Patwardan just yesterday, the high-risk doctor. So she recommended an induction around 39 weeks. So that’s Sunday. Correct. OK. Yeah. And we also are not going to do a C-section for any reason, correct? Correct. All right. Perfect. So the only thing, unfortunately, Ms. Carter, is I am not on call at all next week. I do work in a group of five other physicians though. I think you’ve met some of them, no? Yes, I’ve met them all. You’ve met them all, right, through it all. Let’s listen to the baby. [GURGLING] [HEARTBEAT] He sounds perfect. [QUIET MUSIC] We have to kind of be aware when people are making decisions based on their own self-protective — like I don’t want to feel guilty that I didn’t do enough. Well, now I’m treating your guilt, not what’s right for the baby. Or maybe the doctor says, well, I don’t want to fight with his family. I don’t want to get sued. But now you’re treating yourself and not the baby. So we have to bring it back. So what’s right for the baby? We have to — and get in the muck. Is this the right thing for this person at this time in this family? That’s really hard work. It is. Research is showing that earlier involvement of palliative care can have dramatic impact on lots of different health outcome measures. It was already mentioned, the article in JAMA — the care was cheaper over the course of life. And we don’t like to necessarily say that, but they had less ER stays, less hospitalizations and overall less medical utilization. The quality of life scores were also measured, and we anticipated they would be better. So pain scores, adjustment scores, depressions scores not only of the patients, but their families. And they followed up with bereavement scores of families. And the families after death, they also were doing better. The very unexpected outcome was the patients lived up to three months longer on average. So we actually improved survival. Living lives longer, better and cheaper sounds awfully good, but it acknowledges that we are going to die at the end. [QUIET MUSIC] I think it’s profoundly sad. The idea of dying, of not being a part of this world anymore, is profoundly sad. But it’s such a reality. I don’t know if it’s good, I don’t know if it’s healthy to teach each other, to teach our children, to not talk about something just because it’s sad. I got some yummy tortellini. We have tortellini soup. I was about to say something. OK. What? Then I totally forgot. It happens, man. It’s called getting old. Our family’s like a pattern because Dad and Zaira don’t like olives, and me and Mom like olives. That is like a pattern. I don’t think that’s really a pattern. We’re just on the olive team, and you guys are on the no-olive team. Mm-hmm. You’re the only one on the mushroom team. I’m the only one on the mushroom team. [LAUGHS] You know, I think I mix my professional life and my personal life a lot. And it’s clear I have a focus on death and dying. And I think it’s incredibly important for my children to learn about grief. I look for opportunities where my children might practice little losses. OK, tell me about Nibbles. He was a great animal to have. Was he our bunny? Yeah. Do you miss him? Yes. Doing the funerals for the pets, or if a toy is lost or broken, really taking a moment of, how does this feel? And certain things can’t be replaced. I’m open with them if I’ve had a bad day. My kids know that I’ve had patients die. I don’t think that they’re overwhelmed by it. You help children ... You help children because they’re sick. OK? You ... You help children to keep them safe. Mm-hmm. You got him? Mm. [SIGHS] Welcome home. [CHUCKLING] Let me see him. Check him out in these big clothes. I know. Everything’s so big on him. [LAUGHS] He’s a little, little guy. He has a little clubfoot. This little cutie. [LAUGHS] All these doctors would come in, like the heart doctor. They were doing echos and doing all these different tests. And everybody wanted to do their own thing. Dr. Tremonti, she was kind of like, they can fix all these things, but he just won’t make it. We’re kind of having some time with him, but not a lot. So the only thing I can do is just love on him until that time comes. As a doctor who specializes in death and dying, I get asked often, how would you want to die? If I’m really magical about it, I would say that I want to live till I’m 100 with everybody I love healthy. And then I’d like to magically turn into a baby and die in my mom’s arms. Because I think there’s not a place in the world of more peace and unconditional love. [QUIET MUSIC] [BABY FUSSING] I think that we should all explore a little bit more this death and dying thing. I think that this is very isolating for people, and people are uncomfortable around it, but if the solution is that we just avoid it more and more, then one day, each one of us will be in the situation and nobody will be there for us. [QUIET MUSIC] [APPLAUSE] [INAUDIBLE] I’m going to ask y’all to stand, come up here. And if this little dude, Giovanni, was only placed on earth just to get us here in this room for just a moment of love, this is why we here. We celebrate him tonight. [QUIET MUSIC]
Dying in Your Mother’s Arms
A palliative care doctor on finding a “good death” for children in the worst situations.
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