"[EKG machine beeping]" "[Dr. Zitter] How are you doing?" "I know that's a stupid question." "I don't think you're doing very well right now." "But can you write for me so that we can talk a little bit, or do you not have the energy right now?" "Do you wanna write?" "Okay." "[patient groans]" "[Dr. Zitter] Okay, I have a better idea." "What's the first letter?" "[doctor] T. -[Dr. Zitter] T." "No." "[patient groans]" "[Dr. Zitter] Okay." "Start one more time." "Start one more time." "I know, I'm sorry." "I'm sorry." "I'm sorry." "Can we try with these letters, okay?" "I." "N?" "No." "I'm..." "Say it again." "Is it about the tube?" "Is this about the breathing tube?" "Do you want the breathing tube out?" "Do you want me to take it away?" "You want it out?" "What if you die if I take it out?" "This is Violeta calling from intensive care at Highland Hospital in the ICU." "14:19 was the time of death, yes." "Sixty-six-year-old gentleman, history of HIV." "Past medical history of dementia, COPD." "Probably substance abuse, cocaine and currently methadone." "[EKG machine flatlining]" "[Dr. Zitter] Who is this?" "Call the crash cart in." "[Dr. Zitter] It's okay." "[woman crying]" "[doctor 1] Let's get an EKG-- -[doctor 2] EKG." "[indistinct chatter] -[woman gasping] [doctor] I just think we should have the conversation about, "What did he really want?" 'Cause if he didn't want even antibiotics, now we're putting a ventric in and then we're gonna obligate him to a shunt" "if he makes it out of this." "[nurse] Best case scenario for the guy is probably grim, but he's also 30 years old and we don't know how much of his decision-making is attributable to medical illness, it's impossible to state." "So, I'm uncomfortable with making the decision now to let him die." "[Dr. Zitter] Here's the reality." "We're all gonna die, everyone standing in this room is gonna die one day and it's good to have a little bit of a say in how." "[EKG machine beeping]" "I know, I know, the straps." "I know, sweetheart." "It's frustrating, I know. [softly] I know." "[Gordon] It's all good." "Okay, okay, okay." "I know." "The reason the straps are on is so that you don't pull anything out." "It's to protect you." "Okay?" "Mmm-hmm." "I know it's hard to communicate, huh?" "Mmm-hmm." "You want me to... you want me... you want me to help you get your legs out?" "I..." "I can't, you know that." "You wanna get up?" "I can't get you up." "Okay, if that's what you're trying to tell me, I understand." "Okay?" "I know you want me to get you out." "Okay." "All right." "I would say that if her muscle strength doesn't improve..." "If her muscle strength improves, then, you know," "that eliminates a lot of problems for us." "All right." "But if this represents a decline in the overall disease state..." "Or... or just even stays the same." "Stays the same." "Then she will require some sort of machine to help her breathe." "[Gordon stutters] Is there any other option, or is it really this ventilator system or that, are those the... are those the only two options?" "[Dr. Bhargava] The tracheostomy is... is really the main form of... of intervention we could offer, if she were willing to accept, you know, being attached to a machine." "Is that something that she would want for herself, that she would be open to?" "Is it just to... just to kinda keep her in limbo?" "Is it..." "I mean, that's... that's pretty much it?" "You're right, it's a form of limbo." "[machine beeping]" "[Gordon] I need ya to help me get beyond this." "I have to be right for her." "I'll be right for you." "[indistinct chatter]" "So she showed up at the hospital" "in the car and then-- -[doctor 1] No." "She was in the car." "They were trying to bring her to the hospital and she arrested." "Sixteen to 26 minutes from arrest to return of circulation." "[Dr. Zitter] Sixteen to 26 minutes of down time." "[doctor 2] Mmm-hmm." "[doctor 1] Mmm-hmm." "Was that the family doing CPR in the car?" "[doctor 1] Yes." "Okay." "You woke up in the morning and said, "Mom, I'm taking you to hospital."" "[Tama] She didn't want me to call the ambulance, 'cause she... thought about that $2,000." "You know, so..." "[Dr. Zitter] Oh... she kinda was like" "[Dr. Zitter] So she finally said, "I'm going in."" "Not in the best financial situation." "Oh, sorry." "Yeah, so then she jumps in my husband's car, we're driving off, and she said, "Guys, hurry up," and then she went... [gags]" "And then we had to pull her out the car and start to do the resuscitation with the CPR." "[Dr. Zitter] That must have been terrifying." "Oh, it was beyond terrifying." "I must say, that's impressive, and your mom's lucky." "And now where are we?" "Tell me what you understand." "[Tama] They want big responses." "[Dr. Zitter] Yep." "[Tama] I'm checking for any response that I can get." "When I first came in here, I could touch her hand," "I could do anything, she wasn't gonna open her eyes." "Okay, now I come in, I touch her hand..." "Yeah." "her eyes went wide open." "Selena?" "Can you squeeze my hand?" "Squeeze my hand." "Squeeze my hand, honey." "Okay." "Would I like to see her really looking at me and kind of following commands?" "[Tama] Yes." "Mmm-hmm." "Yes, I would." "Am I concerned a little bit still that maybe we won't get a whole lot more?" "I am." "To me, the whole situation is miraculous in and of itself" "Yeah." "So I'm looking for another miracle." "[Dr. Zitter] You know, this is clearly a loving daughter who will do anything for her mother, and she's really wrestling and struggling, and sometimes it's just too much for one person to make a decision like this" "on her own." "[brother 1] Yeah." "I think you're very sensitive uncles," "and I think she's lucky." "Mmm-hmm." "[brother 2] That's all she has, is her mother." "She's an only child." "[Dr. Zitter] I know." "So it's really, really difficult." "[brother 1] Is there any definitive test" "that will tell you that absolutely, -[Dr. Zitter] Mmm-hmm." "positively, there is no way for her to recover under any circumstance?" "[Dr. Zitter] She won't wake up from this in a meaningful way, and I don't know if that's been clearly stated to you, if you've heard that." "[brother 1] That's my first time hearing that." "[Dr. Zitter] Every day, people with very poor neurologic prognoses are attached permanently to machines, and, unfortunately, it's very hard, emotionally, for us physicians when we feel that we're taking a body and we're just... we're keeping it alive when it's not really the person." "[brother 3] But God have proven to me, miracles are miracles, and we asking' him for one." "[softly] Okay." "If I had to make the decision for myself, take me off and if I breathe on my own, then that's fine, that's God's will." "If I don't breathe on my own, fine," "then that's God's will." "Mmm-hmm." "[brother 4] You know, 'cause I believe in prayer... but I believe in nature taking its course, too." "It's tough." "It's tough." "I would hate not to do the trache... [voice breaking] because that's my..." "my sister." "But I" "Mmm-mmm." "It's too much for me." "[Dr. Zitter, softly] I understand." "I wanna try everything I can." "[sobbing] I just wanna try whatever, it doesn't make any difference." "[sniffling]" "[Dr. Zitter] Well, there are very few things that you can be 100% certain about." "And you risk hurting people if you're wrong." "[inaudible]" "My concern is if we continue to draw it out" "Hmm." "and we continue to do more and more things to her," "we're gonna cause more suffering" "Sure." "without likely benefit." "[Dr. Zitter] When I was a young attending," "I had been asked to go put a large catheter in someone's neck." "She was dying." "And I went into lifesaving mode." "Right before we were getting ready, I look up and I see this nurse in the doorway, and she looked at me, locking eyes with me and said," ""Call the police." "They're torturing a patient in the ICU."" "My heart dropped into my stomach, and I realized, "Oh, my gosh, she's right." "What I'm doing right now is not gonna help her." "It's not gonna get rid of this disease that's killing her."" "And I don't wanna do that anymore." "Living homeless, debilitated, -[Dr. Bhargava] Mmm-hmm." "failure to thrive" "Mmm-hmm." "He's been institutionalized for a long time now." "We're just keeping a close eye on you" "to make sure you're feelin' all right." "[patient] Okay." "[Dr. Zitter] Do you have any family members or anybody that is part of your family?" "No, that I know... [stutters]" "[Dr. Zitter] Oh, I'm sorry?" "Not that I know of." "Mmm." "Well, we'll help take care of you then." "[patient] Okay." "If we're gonna treat, the treatment is the ventriculostomy." "And what would" "So if you guys don't agree with that and if you tell me, "Nope, this guy would want everything done." "He'd want to live, even if he was vegetative on a ventilator for his life with a feeding tube," then the treatment is to put the ventric in." "I don't feel that he is able to make those decisions, and I don't feel that we have someone who can really make them for him." "We don't really know his prognosis." "We don't know if he ever had capacity for decision making, so the ethics of this are murky." "Do you like to make your own medical decisions, or do you like the doctors to make the decisions for you?" "If we don't get clear, we're not gonna give him a chance to opt out, and we're just gonna do what we do with all of our patients, which is just plug them in and let them die on machine." "How would you feel if you... were not getting better on a breathing machine?" "Then I don't wanna be on a breathing machine." "I don't wanna suffer..." "Okay." "with that machine." "I mean, it's his decision, but he know as well as I know..." "I don't wanna see him go, you know, 'cause I haven't lost a parent yet, you know, so I wouldn't know how it feels." "You know, so..." "We're wondering if maybe this is the point where we kind of need to stop, decide, and maybe have" "Put the tube in, kinda put you to sleep and have the machine help breathe for you." "[muffled] How do you make that choice?" "[Dr. Zitter] It's a" " It's some" "For some people it's an easy choice, and for some people it's not." "I'm 38." "I know you're 38." "A new grandma." "I know." "I don't wanna give my life away yet." "[Dr. Zitter] I know." "[grunts]" "[EKG machine beeping]" "[indistinct chatter] [machine beeping]" "[Gordon] You look better today, you know that?" "You look better." "You look like you got a little bit of a fight in you today." "Mmm-hmm." "Good." "So yeah, that's right." "I'll make you laugh as many times as I can." "That's the deal." "All good." "All good." "[Gordon whispering] Her..." "organs are failing." "Right now, the only thing that's functioning is that ventilator." "It's keeping her" "'Cause she's got saliva, she can choke at any time." "She's been throwing up." "So that's all part of it, her muscles in her lungs are stopping." "[Dr. Zitter] Hey, Donna?" "Um, we're gonna just step out." "I'm gonna go talk to your family for a little bit... and then we're gonna come back and talk with you, if you're up for it." "[Dr. Zitter] Okay." "[clicks tongue]" "Things that're happening in her body right now are all the kinds of things that you would expect with end-stage myotonic dystrophy." "And we are very concerned that... that we may not be able to get her breathing on her own again." "And what that means, looking forward, is... attachment to a breathing machine... in what's called a ventilator facility." "The other approach is to say we're gonna take her off the breathing machine and hope that she lives for a long period of time." "It probably wouldn't be, I'm gonna guess more than a day or two." "Maybe, you know, I've been surprised, sometimes it's longer... and really focus on her comfort and her calmness, and her being with her family and let her pass naturally." "[sniffs] Knowing at some point you gotta get to that reality, you know, but you can always put it off, and now it's here." "I can't tell if she is alert enough to have this conversation." "When I talked to her this morning a little bit," "I didn't feel that she..." "was really understanding." "[stutters] And that's-- At that point, if that's the way it is, and if things don't... if she doesn't perk up and really become herself, that's when surrogate people have to step in and make those choices." "[voice breaking] I wanna make sure that she knows that-- that we've explored all the options." "I told her I'd never let the doctors stop." "Mmm-hmm." "[sniffs]" "I would never let 'em stop, but when I told 'em to stop, she had to trust me." "[sniffing]" "[Dr. Bhargava] And I'm with you." "I don't want her to suffer or have anything prolonged or painful." "I just want them to make a decision with the best information available." "And I feel that as of right now, as of today, we haven't had, you know, an expert in her disorder weigh in on what her prognosis might be." "My biggest" " But I was saying" "My biggest fear is telling a family that there's zero hope when maybe there is." "I sat with that family for an hour and a half." "Yeah." "And I pulled every little bit of information about her" "Right." "and I found that she'd had conversations with her brother that she had initiated several times" "Yeah." "about not wanting to be on a machine, not wanting to be kept alive on machines." "Part of me is, like, death is so final that if we sort of..." "I know." "If we make the decision not to go down that route..." "I know, I know." "Yeah." "This is" "And frankly, we're not even making the decision, they are," "but it is..." "Well, that's what I'm trying to do," "guided by what we say." "So..." "I'm trying to put it on" " I just" "I don't know. [stuttering] This is a conundrum for me, too." "[indistinct chatter on PA]" "Hi, Mama." "Mama?" "Mama, I know you're in there." "Mama?" "[brother 1] Selena." "[brother 2] Hey, sis." "Hey." "Hey, sis." "You got your brothers here with you." "We're here." "Hey." "Selena, this is what I'm seeing." "That's the first time she's jumpin'." "[brother 2] I know you trying to say something, huh?" "[brother 3] Yeah, that's all right." "[brother 2] You trying to say somethin', ain't you?" "[brother 3] Yes, Lord." "Come on now, y'all, look at her." "She opened her eyes and move 'em." "[brother 3] Yes, God." "Hey, sis." "[brother 3] We love you, Selena." "[brother 2] Yes, we do." "[brother 3] We not gonna leave you by yourself." "[brother 2] We got ya, baby girl." "[brother 4] We just ask that you touch her, Father God." "You know the doctors say one thing, Father God, but we know that you the doctor of doctors, Father God," "and the Lord of Lords, Father God." "[brother 3] In Jesus' name." "[brother 4] In Jesus' name, we pray this prayer." "Amen." "[brothers] Amen." "[Tama] You know, even though my mom may be in this situation, it would feel like murder to pull her life support." "That's what it would feel like to me." "We're gonna support you through this." "This is" "very painful for you and your family." "Absolutely." "And we're gonna, you know..." "We're all, I mean, everyone hopes for a miracle," "I'm hoping for a miracle." "I feel like, maybe as a doctor, being as smart and being as knowledgeable and being in-- inside of medical journals, you know, it... it can dwindle the optimism a little bit." "I'm just trying to help you make a decision that's right for your mom," "Absolutely." "and that's why I want you to be able to think through this as clearly as you can, just thinking about what would my mom have said if the doctors were all saying," ""We don't think she'll wake up."" "My mom already made her decision, and that's how come her heart is still beating." "She can go at any time, but she knows to stay here because she loves me." "If I were to pull that life support" "Okay." "there would be no me." "Okay." "Okay." "[Gordon] Is that how?" "[Dr. Bhargava] How long?" "Okay, how long..." "That that tube is gonna stay in." "I wish I could tell, ma'am." "I can't tell because, right now, you are breathing independently... but the machine is providing you some help right now." "I think the hard part here is just... we don't know how her body is gonna go." "If this" " We could say for sure you can spend two months with a trache and a feeding tube and then you'll get better, then most people would probably say, "Sure, sign me up."" "Exactly." "But if it's," ""I'm gonna be going to this next step and I have no idea" "whether I'm ever gonna get off of it,"" "I know." "that's a harder decision to make." "[grunts softly]" "[Gordon] We know you wanna get out of these straps, right, sweetheart?" "We can all tell you've been strugglin'." "So now we wanted to talk about where do we go from here?" "What do you wanna do?" "Okay?" "If... if you can breathe on your own, they can take the tubes out." "But if, for some reason, you can't breathe... then our options are do the trache..." "down into your throat... and that would hook you up to a machine." "And we don't know if that's what you want." "No?" "You don't want a feeding tube and the... and the tracheotomy?" "No." "No matter what." "Okay." "[Gordon whispering] You did the right thing, okay?" "I'm gonna do the right thing." "Just trust me." "Do you trust me?" "Mmm." "I trust you, okay?" "I'll take care of her." "You know that." "That's my promise, right?" "I got her." "[kisses]" "You don't worry about her." "That's one thing you don't worry about." "Okay?" "I got her." "Okay." "[sniffing]" "[indistinct singing]" "And I'm so sorry that you're gonna be... [daughter sobbing] Don't." "You have nothing to be sorry about, Mom." "Stop." "You can't-- You don't make these decisions, things happen." "It's okay." "[patient sobs] No..." "Things happen." "Everybody loves you so much." "You got so much love, so much prayers, Mom." "Keep fighting." "Keep doin' it." "Keep doin' what you doin'." "[weakly] Tell everybody..." "Hmm?" "Tell everybody... calm down." "[daughter chuckles] "Tell everybody to calm down."" "[piano music playing]"