Who Cares? (Part 2): That Good Night w/Sunita Puri - Transcript
This is a transcript of a “Terrible, Thanks for Asking” episode entitled “Who Cares? (Part 2): That Good Night with Sunita Puri.” The text may not be in its final form and may be updated or revised in the future for accuracy.
Listen to the episode here.
There is a poem that is read at funerals, at sickbeds. It is read in moments of anguish. The poem is by Dylan Thomas. It’s called “Do Not Go Gentle Into That Good Night.”
I read it when my father was sick, when my own husband was dying.
I read it over and over. I wept to it. And I will read a part of it to you.
“Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.”
My father was 64 when he died, which is either young or old depending on who you are and how you see the arc of life. My husband was 35, which is old when you’re a teenager, and young. It’s just young.
We do not all get the privilege of dying when we are old. We do not all get the chance to rage against the dying of the light. For some of us, the switch will flip suddenly without warning. Lights are snuffed out every day, every moment, by accidents and sudden illness, violence.
But for those of us whose lives are like a setting sun… must we rage? And do we, even? What does the rage do when the end is inevitable and your body isn’t able to do what your spirit aches to do?
These are big questions, and they’re questions that our guest, Dr. Sunita Puri, was contemplating when she was just a kid. Sunita’s mom was a doctor who was in residency when Sunita and her little brother were just little kids. Their mom’s work meant long hours, and a lot of time with Dad.
Sunita: When my mom was working these insane hours, it was understood he would be here with me and my younger brother. And when I was five, I remember we went to Long John Silver’s and got hushpuppies, and he got me a Hershey's chocolate bar, just the plain kind. And we drove back through the snow and we sat inside watching the sunset. And I said to him, “I want the sky to look this pretty all the time.”
And that's when he talked to me about how, “Nothing stays as beautiful as you want it to. And that, too, is beautiful. That everything that is temporary, realizing that it's all temporary, is the biggest gift I can teach you right now. Because when we hold on to things that are going to change inevitably, we're the agents of our own suffering. Because we are attaching ourselves to things that we don't want to change and we're not accepting that change is going to happen. That plant over there? One day, that plant is going to turn brown and die. Even when I keep watering it. One day I will be old and walk with a cane and you'll be really sad. But that's how life goes.”
And I just distinctly remember looking at him and just my mind was blown.
I’m Nora McInerny, and this is “Terrible, Thanks for Asking.” This is part of a three-part series on care in America. We’ve talked about the role and value of care in our families, and in our homes and with our loved ones, and now we’re talking about one of the hardest things to face… which is the end of life.
We’re talking with Dr. Sunita Puri, who works at the Keck School of Medicine at University of Southern California.
As the daughter of a doctor, Sunita grew up watching and admiring her mother’s work.
Sunita: So my mom's job was literally a part of our household. I really think of medicine as the fifth person or concept living in our home, in addition to my parents and my brother and I. And I really vividly remember, I must have been five years old, and I remember her leaving at probably 4:30 or 5 in the morning to drive from where we lived in Evansville, Indiana, to Louisville, where she was a resident in Kentucky. And I remember her in her blue bouffant and her surgical scrubs. And every day I would hear her getting ready to go. It's like I was timed to wake up at that time, and I would just start crying. I tried to grab on to her legs so she wouldn't go. My dad would have to pull me off of her. And I think my brother was an infant at the time, so he doesn't remember this. But I always had this deep craving for my mother to be around more than she was. And at the same time, I remember being like probably 6 years old and going to the hospital with her and her holding my hand and us going into the post-anesthesia care unit. And she's an anesthesiologist. So after her patients came out of the operating room, she would go check on them. And so she took me with her. And I must not have been really even tall enough to see much over the hospital beds of these patients. But I remember my mom letting go of my hand and holding her patient's hand. That movement of her hand stands in my mind very clearly, because she did put her hands on patients. She touched them with her hands and with her words. And she would tell them, “You did great in surgery. How is your nausea? How is your pain? What can I do to help you feel better now that the hardest part is over?” And I just remember looking at her and the tenderness of her voice was the same with her patients as it was with me.
And I'll never forget the smell in the post-anesthesia care unit, of this kind of mix of Clorox and some other very tough cleaning agent. I'll never forget the moans I heard from patients who needed pain medicine, and I'll never forget how my mother would not just look down at them. She'd often pull up a chair, so that they didn't have to crane their necks and she was at eye level with them. And that to me, really showed me not just how you can be a doctor, but how you can be a human being connecting with another person.
That was what Sunita envisioned for her life: that kind of connection.
Sunita: I was very conflicted about whether to go into medicine. I always have had the heart of a writer and a more creative person. I played piano classically for many years. I read voraciously. I wrote horrible teenage poetry, and so I always had this more artistic bent to me. And in college, I really struggled with whether I want to go into medicine or whether I want to teach English in high school, whether I just want to be a writer on my own terms. And what ultimately led me to medicine was because I really wanted to be in the world as my mother was. And knowing that that was her way of contributing to the betterment of the world, it was always something that had this gravitational pull for me. I also really loved anatomy, physiology, biology and figuring out how those things interact with someone's psyche. So it was always there, but I really decided not to go as a full-time writer because that pulled a little harder at me.
Sunita did, obviously, go to medical school. And she assumed that she would be an ICU doctor. That she’d do work that was similar to what her mother did, where she’d shepherd people through that thin space between life and death, towards healing.
But that wasn’t exactly how it went.
Life is about so much more than just not being dead. Right? But sometimes it felt to Sunita like the emphasis in the ICU was less about life in its truest, biggest sense and more about just avoiding death.
Sunita: We were doing things because we could do them but not necessarily because we should do them. And so one of the situations I talked about in this book was of a patient who really was not well before he got very sick, after he broke a hip and had an orthopedic surgery, and started to have very great difficulty breathing. So I was the one who put him on a ventilator, I put a breathing tube in his throat. I was the one who eventually started dialysis for him. I manipulated all of his antibiotics. I put very dangerous, invasive monitoring devices in him. And every day when I wrote my notes about him in the medical record, the big thing clanging in my brain was, “What are you doing here?” We all knew he wasn't going to recover to the sort of life he wanted, but not a single one of us said it.
Nora: Where does that fear come from?
Sunita: I think it's not a part at all of our training, so we don't know how to talk to people and their families about the fact that they're dying when we know what's going to happen. And we also fear, I think, big emotional responses that we may not be able to handle. And the last thing I think that contributes to this is fear of lawsuits. And that's really unfortunate because I, in my experience, when you have a humane and kind conversation with a patient and family about how sick they are, and about how we have choices we need to make together about the right next steps — not the things we can theoretically do, but the things we should do for the human being in front of us — when we have those discussions, people don't threaten to sue. They might have really strong reactions emotionally. But you know what? They should have strong reactions emotionally. That's part of what we're there to help them feel and move through, or stay with them for as long as that may be.
That conversation with her dad, where he told Sunita that everything is temporary? That the resistance to change, to what is happening, is what creates suffering? That conversation echoes in the back of her mind. And it leads her away from the ICU… and towards change, temporality, and one of the hardest conversations and transitions we face. Sunita is not an ICU doctor. She’s a palliative care doctor.
Sunita: If someone doesn't know what palliative care is, they're in the majority of Americans. And honestly, in the majority of most people in the world. They're also in great company with a number of physicians and nurses, because we've heard this term, maybe. But what does it actually mean and what does it practically mean? Those tend to be a mystery.
So palliative care, the definition I always give to patients and families and my colleagues is I am a quality of life doctor. And what that means is I help with two big things. One is symptoms. So the discomfort that your disease and sometimes its treatment is causing. And treating those symptoms is part of my expertise. So I can help you to enjoy every day to the fullest.
The other thing I do is talk with you about what's important to you in your life. Make sure that you understand exactly what's going on with you and your health, and together figure out what the best steps in your treatment plan are, given what matters most to you in life. So you have a say in what happens to you. You didn't have a say in whether you got this disease. But I'm here to help empower you to talk about the things that are hard to talk about.
And I work with your teams. So we're all on the same team, we're not separate. And you can still get your chemotherapy and palliative care. It's not an either or. That's generally some version of that is how I explain myself to people. But I'm very careful to say that what I'm focused on is suffering and quality of life. I have a team of a nurse, myself, a social worker and a spiritual care adviser. We all work together to address physical suffering, but also emotional and spiritual suffering for you and your family, so that regardless of what happens to you, you feel you are well supported, well cared for, and that your suffering is as low as we can get it.
It’s different from hospice, but the two are easily confused for one another.
Sunita: The way I think of hospice is that it's basically palliative care when someone has about six months or less to live. So they get the same interdisciplinary team full of experts with different lenses and training to bring to the situation. The big difference is that with palliative care, you can still get certain treatments. But on hospice, that's a time when things like chemotherapy or dialysis or advanced devices to support your heart, we're stepping away from those and focusing on the symptoms that you're suffering from as the disease takes its course.
And there's actually a number of studies that show that having, for example, palliative care involved at the time of a hard diagnosis actually can extend people's lives. So where a lot of misconceptions exist around “palliative care shortens lives, hospice shortens lives,” there's actually not very much evidence in our scientific literature to support that. In fact, the opposite is true.
Nora: You actually, as a doctor, don't even have that much time with the patient. So naturally, that would be a scary proposition. Who can afford to help somebody through a huge emotional reaction when the economics of medicine are that every minute of your time needs to be accounted for.
Sunita: That is such a great point. And I think between not having time and not having the training to have these discussions when we should — not at the point of a true emergency, but starting these conversations early when someone first gets sick — I have seen that when you do that, then the amount of time you need to spend actually goes down over time because you've established that line of communication. So I like to think of it as like concentric circles. So the very first time you get a very difficult diagnosis, ideally palliative care should be involved so that we can get to know you and the people who love you. And we start with very general questions like, “Tell me about yourself. Tell me what you know about your illness. Tell me what your illness has changed about your day-to-day life. What discomfort are you living with? What are your fears and your hopes for the future?” So really broad general questions. And then as somebody either gets sick or gets better, we can make those questions more specific. “So given that you've had three rounds of chemotherapy and you're telling me that you're in a lot of pain and you can't get out of bed, what are your hopes in this situation for yourself? What are the limits and the things you would not want done to you?”
And that's where I think when you have the discussion early, you're not going through all of the initial questions and the specific ones in the setting of an emergency, where, let's face it, no one can think with a logical mind, and I wouldn't expect them to. But the far more common situation, Nora, is that I'm consulted when someone's in the ICU with a disease that their team has known for a long time is going to hit this point, but no one's raised the tough issues. And I think between a lack of training and a lack of time and even now, not knowing who should have that discussion, because people can have a primary care doctor and they can have four other subspecialists, like an oncologist, a cardiologist, a psychiatrist, you know, and everybody's kind of wondering... who's the captain of the ship? Who should be leading that discussion?
So it's so complex. And I feel for my colleagues, and I feel for my patients and their families. But I also think we're doing them a huge disservice when we don't bring up the uncomfortable stuff straight up in the beginning.
Nora: Yeah. Which is just... speaking of which I have to unbutton the top two buttons of these jeans. They are so tight.
Nora: They're just. It's just... they don't fit.
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We’re back. Sunita Puri is a palliative care doctor. It’s her job to make sure that you maintain your comfort and quality of life while you’re undergoing treatment. And the reality is also that Sunita sees people while they’re nearing the end of their life, which can be a very scary time.
Sunita: So I think a lot of fears and myths around palliative care and hospice exist. I certainly get asked, “Are you here to get me to give up?” Or a physician colleague will say, “He's not ready to throw in the towel, just so you know.” They'll say, “He's a fighter. He's just losing his will to live. Can you help?” And so these kinds of phrases that set up this binary between fighting and giving up, I find that to be a very toxic and honestly not very humanistic or patient-centered binary. Because it assumes that whether someone lives or dies, whether a disease is treated or not, is up to them, and their willpower, and their outlook. And really, in my experience, a lot of what determines whether someone lives or dies is biology. And the body showing us its limits. So it's not a matter of personal willpower. And I think that's kind of a motif in American culture around, “If you put your mind to it, you can achieve this.” I'm all for positive mindset, and all the support we can give someone suffering from any sort of illness, but I also want to help people tease apart what their role is and what their body’s role is and who they are doesn't always determine what their body is going to do.
Who you are doesn’t always determine what your body is going to do. And THAT is hard. The day we did this interview, Sunita had just seen one of her patients.
Sunita: She's got end-stage ALS. The other doctors are like, “She's just not participating in physical therapy because she doesn't have the will to live. And we think she's depressed.” Of course she's depressed. She's a painter with ALS. You know, like, she can't move her legs, really. It's only a matter of time before her hands go. You know, she is fully dependent on everyone else for care, but their concern was that she doesn't want to do more because she doesn't have the will to live. There's no doubt the woman's depressed, but she has full capacity to make a decision that she's done. And just talking to her, I was like, “Wow, you know, I wish other people could hear your perspective and not feel like they're giving up or quitting, but rather making, you know, a really well-thought out decision for themselves.” And yes, sometimes patients are really depressed. That doesn't mean they don't have the ability to make decisions for themselves.
Sunita wanted to be a writer when she was younger. And she is — her memoir, That Good Night, is one of the most beautiful books I have ever read. It’s the story of her and her patients, and reading it, you can tell that she loves language. Hearing her here — you can tell that she loves language. And language is a superpower when it comes to her job. Because it’s not just dying that is hard, it’s not just the prospect of death. It’s the recognition of it. It’s the conversation around it, which is often no conversation at all.
Sunita: I think the great triumvirate of words that doctors do not know how to deal with is, “I'm a fighter. I want everything done. And I'm waiting for a miracle.” When we hear those words, or at least when I heard those words as a resident, I took them at face value. So someone might be close to dying in the ICU, for example, but when the family would tell me he's a fighter, I would link a lot of assumptions or impose my own interpretation of that word onto that word. So I would say, well, I have to do everything then, even though I know he's going to die no matter what I do. And what I learned, I kind of call myself an accidental linguist. And I use that term because so much of what I need to do in palliative care is get very granular about what people mean when they use certain words. So what I do now is when someone says, “I'm a fighter and I want everything done,” I approach that with compassion and curiosity rather than judgment or assumptions. So I might say to someone, “Tell me what being a fighter means for you. Tell me what it looks like. Tell me what you're fighting for at this stage in your illness.”
And it's the same thing with people who say they want everything done. I believe there's layers of meaning to excavate underneath those words and that we're all kinds of reading from this sort of “Grey's Anatomy,” other TV show script in which someone gets sick and, you know, Meredith Grey runs in and says, “I'm going to do everything to to help you.” We read from a script where the words are very elastic in their meaning. So what does “everything” mean to you? Especially if someone's actually, you know, dying no matter what we do. What if I told you that we are doing everything and he's still dying? Could we talk about that? I hear that you're a fighter and that you want to live, no matter what. But what if you as the fighting spirit doesn't match up with your body, which may be at its limit? Can we talk about that? When you tell me you're waiting for a miracle. What is the miracle you're hoping to see? Because a lot of times when people use that word, what they're saying is that, “I know he's in the ICU, and I know you're saying he's really sick, but he's going to come home exactly as he was before.”
And that's the subtext you really want to get at. The word means very little to me. It's what the word is standing in for that is the meat of these discussions. And we are not at all trained to do that whole excavation of meaning. But when I have sat with someone, and it doesn't take that long and I get it, what they're really saying, what they're really hoping for, that is the only point forward to have an honest conversation, is to say things like, “I hear that you're a fighter. I also see that your body can't fight anymore. I want to help distinguish those two things so we can have a real conversation about what's possible and what may not be.”
Part of the difficulty of Sunita’s work is that people don’t understand its purpose. Isn’t a doctor supposed to SAVE life, not just make it comfortable? It’s not just patients and their families who have been reluctant to meet with Sunita and her team, who view her work with a bit of suspicion. People who know and love Sunita personally are like, wait, what is your job? WHY is your job?
Sunita: And my mom and dad, you know, very deeply spiritual people who believe that the end of the body is not the end of us, who see dying as something very sacred and a process that, yes, medicine can help with, but it can also be just between you and your God. And even then, my mom said, “Why would you want to do this? Why would you want to be a doctor and specialize in this?” Because at some level, we are all socialized to believe we should do everything we can to extend a life. And to talk about death is to in some ways either quote unquote be negative or cause the patient to give up hope.
And so even my mom didn't want me to do this work. And I will tell you to this day, I have relatives. I have friends who say, “Why didn't you just become an ICU doctor? Like, why would you subject yourself to this all day?” And I don't think of it as subjecting myself to anything. I think of it as me having a tremendous honor and privilege of midwifing in a way, people from one point of suffering to another and eventually being a way for them to go to their next plane of existence, whatever that might be.
I am also someone who has always been attracted to very deep and profound things. And so to sit with someone, like even the patients I saw today, and ask them, “What has brought you meaning in your life? And what brings you meaning is your dying? Cause I would like to help maximize that.” And to kind of use language in a particular way to mediate people's thoughts and their words and then what I can do for them is also just my writerly side, my linguistic-obsessed side coming out to figure out, with this particular person, how do I need to phrase things? With this other person, I might need to be more gentle. But another patient might think gentle is beating around the bush.
So it's a delight in a lot of ways for me to meet someone for the first time and have to get them comfortable with me so that they can talk to me about some of the most intimate and harrowing things in their minds, in their heart, in their life and in their death. And that, to me, feels like a blessing God gave me to be able to do this work. And I won't lie, Nora, especially during COVID, it's been hell on Earth. It's been such a hard time, but I still wouldn't trade it to be an ICU doctor or anything else.
Nora: Part of that binary too is connected to a culture like American culture that is so death-averse. You cannot respect death if you don't respect life in its truest sense.
Nora: And I do not think that we are a life-affirming culture. A country where a person can have a baby and be expected to work two or three days later, maybe that same day for a lot of people. I don't think a country where the treatment that you get is dependent on your ability to pay for it is a country that respects life. I don't think that a country where, when people are like “Well, I want to choose my doctor.” You already don't choose your doctor.” Your health insurance chooses your doctor. Who chooses your health insurance? Your boss. You know, none of it is a choice. And I don't think a country where, you know, a doctor is given eight minutes to spend with your child once a year is a country that can respect life. Other than in this binary where you are either fighting for life, at what quality does not matter. You're just here. You're still tickin. That's fine. And so I think that leads to this death aversion. Like that is the opposite of life. That is like that is… no, no. We must never die. When really like that is the completion of life. It is a part of life. It is actually a really beautiful experience, in many ways, even when it's horrifying.
Sunita: I think you’re absolutely right. And I think what it means to respect and value life, and what it means to actually provide for the best quality of life possible for the constituents of a country, our health care system does not do that. It is profoundly unequal. It is very difficult to navigate. And it is set up so that it is so much easier for doctors to say, “Here, take this pill or hey, let me schedule you for this procedure,” rather than actually get into maybe some of your back pain is not just due to lifting a couch the wrong way. Maybe it's also that you have a job where you're on your feet all the time. Maybe it's that it's exacerbated by your own anxiety about how, as you mentioned, how can I take leave from this job if this is what my health insurance is tied to?
I think we don't do a good job on basic health care, even more advanced health care. And we don't do a good job supporting the people who are caring for our patients. So caregivers are the silent heroes in this country. And if we don't, for example, give paid leave when your loved one is very sick and dying. If I'm on the phone with employers, which I have been, laboring this point that, look, this guy is not joking around, his wife is dying. And I don't know how else to put this, but you need to give him leave, and I'll do whatever you need me to do, write whatever letter to attest to this. But these are all signs of a very deep brokenness, kind of a fend for yourself mindset. And so people feel like they're fending for themselves at the end, and that a broken system is not going to guide them to it and through it. And I think that's absolutely right.
We’re going to take a quick break.
We’ve been talking about the value of care and the ways in which our ability or inability to care for others or ourselves is all interconnected. We’ve heard about the challenges that people face when trying to care for their own families. And Sunita sees firsthand the limits of who has access to the kind of care she and her team provide.
I’ve said before that everyone experiences grief, but that GRIEVING — the ability to move through your pain — is a privilege, and shouldn’t be. Everyone also DIES… but to have a comfortable dying process? That is also STILL in this country… a privilege.
There’s no better example of this than the patient in Sunita’s book named Dave.
Sunita: He is a gentleman that I met towards the middle of my fellowship in palliative care, which was right after my residency training ended and when I was pursuing more specialized care in hospice and palliative medicine. And he was a patient at the V.A., and he had end-stage emphysema from smoking a lot. And he was a veteran. And at the time they were given cigarettes just on duty. And so he was addicted to cigarettes and smoked them basically his whole life. And his lungs, as a result, were not able to provide him the oxygen he needed.
So he would come in with, you know, an oxygen tank on. And every few words or sentences, he would suddenly stop, put his hands on his knees and take a big breath in to continue. And Dave was very frail. He had a very abusive son, who had tried to kill him actually on several occasions, by wrapping his oxygen tubing around Dave's neck. And so his son had been in jail and was out on bail. And Dave looked to me like within the next year he was going to die.
And initially I was helping him manage his shortness of breath. And we got him to a better place with that. But then we started getting into conversations about, hey, what would you want in a true emergency? What would you want if I told you that if you were put on a ventilator, the chances of you coming off with this really bad lung disease are extremely slim? You tell me that your independence is something that's really important to you, so I don't know that I would recommend you ever being on a ventilator.
And so we were having these discussions, and he was just adamant about staying out of a nursing home. He was open to having palliative care visit him at home. But Dave, as many veterans are, was marginally housed. So he did not have an apartment. He rented a room in a warehouse. This is in the Bay Area, where basically no one can afford to live there. So he was living in a room that was small, that had a tub and a sink and a cot and a toilet. And that was all it had. He struggled more and more to get from his cot to his toilet to his bath. He was getting short of breath in the shower, so I felt like he needed a team to check in on him at home.
But because Dave lived in a non-residential place, he wasn't eligible for home-based palliative care. And that inequality, that, you know, someone can have served our country and not be able to get palliative care at home, which would save him gas money to come to the V.A., and it would help him help a team to see his environment and make suggestions based on his living situation, he couldn't get that because he lived in a warehouse. In a room in a warehouse. That was all he could afford. That really broke me. And he did not feel like he was ready for hospice care. So here I was in this very precarious situation, wanting to do much more for him than the system would allow me to do, and him telling me, “I'm not ready to go into hospice because I fear that then that will be the point where I can't do anything for my son.” And even though his son was abusive and tried to kill him, Dave wanted his son to have a place to live. He wanted his son to have what he needed.
And here is this gentleman doing all of this, and I can't give him what he needs at home to be comfortable. And it was a really tragic situation, and I remember thinking, like, our system is insane. And then when he started telling me things, like he was seeing things that weren't there. He described seeing a horse and buggy outside of the warehouse and hearing people that weren't there. That sort of stuff can happen when oxygen levels in the brain drop. It can also start — you can start seeing things that aren't there when you're in the early stages of dying. And so I freaked out. And to have my hands tied in that way was a really disempowering feeling.
If there is one Dave in America, there are probably millions of Daves in America. Sunita stayed in touch with Dave and tried to convince him to go into a nursing home, but he didn’t want to. He wanted to live independently as long as he could, even if that meant additional suffering. Sunita’s residency ended before Dave’s life did, so she was not his doctor when he died 10 months later. But she did Google him, find his obituary, and cry for him.
Sunita: I don't know how we change our system’s priorities. But I think the humanity in medicine, if that became a bigger focus, then these things would not be happening. If we reimbursed more for services like home-based palliative care, which could have kept him comfortable and better functioning at home with a team checking in him and/or any patient like him, we would save hospital admissions. We would make sure people were going about their lives with the right sort of support and oversight. It just seems like a no brainer to me.
Nora: It also, I sometimes feel like for people who can't access that level of empathy, it's almost necessary to pitch it as like a pure, pure financial play. And to be like, trust me, it's cheaper to just take care of people. I promise you, it's cheaper than sending them to the ER in an ambulance for something that they could have had treated at home. I promise you, it's cheaper. I promise you. Like… taking care of people is a steal of a deal. OK? It's like buy one, get one half off. OK?
Sunita: Definitely. And you know what? To be honest, I often have to make that argument to justify my team's existence and to argue for more resources. A lot of palliative care programs and also other programs that seem like no brainers — like good psychiatry programs — we don't necessarily make money, but we're doing the right thing and then doing the right thing, you can save money and more importantly, you can save people from interventions that would not make sense and that most people don't want when they're dying, but no one's told them that they're dying. No one's told them that more chemo is not going to result in the outcome they're hoping for, because no one's asked what they're hoping for.
These conversations are not easy to have — and that is what makes them so necessary. That conversation was something I had with my husband Aaron when he was sick with brain cancer and I was pregnant with our son. We sat down and talked through every possible outcome, and we documented it. That sounds dark to some people, but it was really one of the most romantic times in my life. Because it was a level of intimacy that a lot of people never reach with the people they love. We were forced into that conversation; death was a spectre that hung around us. There was no denying that Aaron’s life was going to be abbreviated.
This conversation can easily become a dreaded administrative task. But it doesn’t have to be. And it shouldn’t be. Because, as we’ve talked about in the previous episode, care is a deeply important, deeply meaningful part of our lives.
So, uh… how do we do it? Where do we start? Especially when the conversation is not driven by a terminal diagnosis?
Sunita: Some of the really practical suggestions I would give around advanced care planning, there's two groups you really want to involve. One is the people who love you the most, and the other is your medical team. And the reason why I say that, especially now amid COVID, people think that it's a yes/no question. Would you want a ventilator or not? And that might be the frame or the language in which they're having discussions with the people they love. And it should not be that frame. I think the reason to really involve the medical team is because they know your health. And you can ask them, “If I got so sick that I needed to be on a ventilator, what would that practically look like in terms of me achieving a recovery I want.”
That is the question I would ask your doctors, because let's say you have, for example, I've seen a lot of patients with transplanted organs get very sick with COVID. So they're immunosuppressed. They have to take meds to protect their organ after a transplant. Because they're immunosuppressed, they're very prone to this virus. So them saying to their loved one, “I would want you to keep me alive no matter what — long-term, vent, doesn't matter.” The missing piece of that is what do you actually value in your life? And what would being on a long-term vent even look like or mean for you in terms of what you would or wouldn't be able to do? And that's where you could turn to physicians and say, “Look, if I got COVID or whatever, and I'm so sick that I need to be on life support, can you help me understand what that would look like? Because I want to make an informed choice.”
And a lot of times I see people make uninformed choices, and so their loved ones will tell me, “He told me he wanted everything done.” Now, doing, quote unquote, “everything” for a young person in a car accident is very different than doing everything for, for example, an 85-year-old with end stage dementia. And that's where I encourage people to ask questions of themselves, like, “Who is best positioned to speak on my behalf?” Shockingly, that may not always be your spouse or your children. Sometimes it's worth noting maybe it's my brother because my wife would not be able to tell what I want. She would go on telling what she wants. So really thinking internally, who really knows me best?
The other thing I ask people to think about is who would I not want to participate in these decisions, because we all have that relative or that person who used to be in our life that might roll up and say, “I'm sorry. I'm his sister. I know him best.” I ask people, spell it out on an advanced directive. There's not a place to write it, but just write it in any way.
Sunita’s book is called That Good Night — a reference to the poem I read earlier in the episode. She is not advocating for us to rage against the dying of the light, but for us to acknowledge it. And more importantly, for us to not focus solely on the dying… but on what it means for us to live.
Sunita: The other questions I think you want to start asking yourself and the people you love are, “What makes my life meaningful? What are the day-to-day activities that I would not want to have help with? That would compromise my dignity and meaning and quality of days? How much would I be willing to go through for the possibility of more time that may not look like the quality time I want? What would I want if my heart stopped and I have an irreversible underlying condition?” Meaning that, let's say someone is end-stage cancer. They might be walking around, but if their heart stopped, it would most likely be due to effects of the cancer, which is beyond cure.
That's the context in which you want to think about these questions. I always teach my students there's fact and there's significance. And you want to pair the two. Me telling you you have this condition, and this is what it means, this is the prognosis, is very different than telling you, you have this disease, it's progressing, the significance of that is that I anticipate you will not be able to independently eat, toilet or walk around within the next few months. So it's not just the facts, you need that significance. And that’s the point in which you can make decisions for yourself.
What is it that gives your life significance? What does it mean to live… for you? For the people you love and care about? It has been six years since my first husband died. I am remarried, and my current husband and I have not had this conversation. We haven’t, because… denial? Because we’re busy? But we’re going to have it. And hopefully, you will, too.
This has been “Terrible, Thanks for Asking.” I’m Nora McInerny. Our show is produced by Marcel Malekebu, Jeyca Maldonado-Medina, Hannah Meacock Ross, Jordan Turgeon, Phyllis Fletcher, and myself. Our theme music is by Geoffrey Lamar Wilson. We are a production of American Public Media.