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Description

The concept of palliative care can bring up a whole flood of thoughts and emotions: fear, anxiety, grief, anger, helplessness. But palliative care physician Sunita Puri wants to change people’s perception of her field. And not just laypeople, but also her medical colleagues. Dr. Puri tells Claire why she became a palliative care doctor, how she’s working to destigmatize her chosen field, how she strives to empower patients and caregivers facing serious illnesses or end-of-life situations, and how she hopes the COVID-19 pandemic changed people’s willingness to be open about grief and loss for the better.

Resources from the show

• Read Dr. Puri’s book “That Good Night: Life and Medicine in the Eleventh Hour.”

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Transcript

SPEAKERS

Sunita Puri, Claire Bidwell-Smith

Claire Bidwell-Smith  00:09

Hi, I’m Claire Bidwell-Smith. Welcome to NEW DAY. I’ve been working in the grief and loss space for a long time now. But I first encountered it when I was 14. And my parents both got cancer at the same time. My mother’s illness was really severe. And over four years, we went on a roller coaster of treatments that ultimately led to her death. But in the end, none of us were prepared. We’re never prepared to lose someone we love. I know that. But in my mother’s case, I really didn’t understand how sick she was until it was too late. After she died, I was left with an enormous amount of regret and sadness, that I didn’t have conversations with her about what the end of her life was going to look like. And now I see the same scenario play out in so many of my clients lives today. Over and over again, I’m reminded of why conversations about death and dying are so important, and how medical professionals can do a better job supporting and educating people on how to move through these experiences. Today’s guest is Dr. Sunita Puri. She’s a palliative care doctor and author of That Good Night: Life and Medicine in the 11th hour. I wanted to bring Dr. Puri on to talk to us about end of life care, and most importantly, the real work that goes into supporting families and individuals who are faced with serious illness. There’s so many people in this country who don’t know the difference between hospice and palliative care. And I think it’s really important for people to know what options they have for themselves and for their loved ones during these emotional and unexpected moments of grief. I know this is a really stressful topic, and most of us don’t feel comfortable discussing it. But I’m certain that after listening to this conversation, you’ll have a better understanding of the death and dying process. And hopefully, a new understanding of how we can all be better at supporting each other going through these kinds of transitions.

 

Claire Bidwell-Smith  02:06

Hi, Sunita, I’m so happy to see you.

 

Sunita Puri

Hi, Claire. Hope you’re doing well.

 

Claire Bidwell-Smith 

Yeah, welcome to new day. I start every episode by asking my guest, how are you doing? But how are you actually doing today?

 

Sunita Puri 

I’m actually doing really well. I am at home right now with my dog and my cats and yeah, doing really well.

 

Claire Bidwell-Smith 

Good. I’m so glad to hear that. We met years and years ago in Los Angeles, we’re in a similar field and space. But I was wondering if you could tell our listeners a little bit about who you are and the work you do, just to start things off.

 

Sunita Puri 

Certainly. So I’m a palliative care doctor. And I am also a writer, my first book, which is called That Good Night: Life and Medicine in the 11th hour, came out in 2019. And I’ve written for a bunch of other outlets, including the New York Times and The Los Angeles Times. And in my other life, I am a doctor who works with people who are seriously ill. And I work with them to make sure that their quality of life is the best it can be no matter what disease they’re suffering from. And that involves tending to their physical, emotional and spiritual pain, and that of their families.

 

Claire Bidwell-Smith 

I love that your book that good night has been described as a meditation on impermanence and the role of medicine and helping us to live and die well, can you explain how you ended up in that field? And like why that particular kind of part of medicine?

 

Sunita Puri

Yes. So you know, I came into medicine, really wanting to be exactly like my mother, who’s an anesthesiologist. And so much of my relationship with her is charted in the book, because she was my first example of really compassion in action. And even though she knew her patients for very brief periods of time before they were put under anesthesia, she was still remarkable and formed a bond with them instantly. She would do things like ask them if they believed in God, for example, and whether they wanted to pray together before she took them to the operating room. Actually, she still does this, she prays before she starts a case. And her surgical colleagues know this. So they kind of teased her about it sometimes, but I think a lot of them actually respect the fact that she has a reverence for both science and spirituality, which are sometimes seen as contradictory in the world of medicine. And because I was raised by somebody who had both systems of belief, and somebody who has I advocated very strongly for her patients and what was right for them and what wasn’t. I was kind of naturally primed, I think for a career in palliative care. It is not a medical specialty that is well understood by the public or by people within medicine. And so you’re really kind of advocating on two fronts, one for your patients and their families to have their wishes followed, but to on the healthcare side to kind of convince your colleagues that, you know, you’re not just there to put somebody on hospice, or you’re not just there to take other options off the table. In other words, you are not a threat, but an asset and an asset because you’re helping people find their voice, but also because you’re trying to de-stigmatize the fact that we are mortal beings. And that’s not a problem medicine can cure.

 

Claire Bidwell-Smith 

Yeah. Could you back up for a moment and explain what palliative care is. For those who aren’t familiar with it, there’s still so many people in this country who are not familiar with palliative care. And it does get jumbled up with hospice, I think in a lot of people’s minds, but it’s a really different space.

 

Sunita Puri  06:10

Yes, so I think of palliative care and hospice as sister specialties. And to start with hospice, you know that it really is providing management of physical, emotional and spiritual pain related to a terminal disease, when you have 6 months or less to live. And palliative care is kind of the same philosophy and same function, but you can get palliative care no matter what your prognosis is, and what your disease is. And so for example, somebody who just got diagnosed with lung cancer, that stage four or an advanced stage three, they may have pain, cough, weight loss, loss of appetite. So I treat all of those types of symptoms, but I also talk with them about what’s most important to them in their lives, and what they would want for themselves as they get sicker, and who they would want to be their voice. And you know, what their values are. So we can match medical interventions to their values, rather than just doing what we can and not necessarily what we should.

 

Claire Bidwell-Smith 

Yeah, I want to talk about all the beautiful ways in which you see this work, and all the ways in which you write about it and talk about it. But I kind of want to still backtrack and hear about what it was like when you first went into it. And what was hard and what was surprising and where you saw the lack? And like, what were the moments that made you want to really start advocating for, you know, change around end of life care and palliative medicine and how we look at grief, like how did you get to that? Because I know you didn’t go into it, you know, finding this beautiful space right away? It can be elusive, unfortunately,

 

Sunita Puri 

Definitely. So you know, when I went into residency, I very early on saw that we’re totally ill equipped to talk to people about what matters to them in their life, how they want to live with a serious illness, helping them to anticipate what lies ahead, but also just not telling them the truth. So for example, on rounds, we would talk very openly about the fact that somebody is not doing well, they may not leave the ICU. But when we would talk to the person or their family if they were intubated. We weren’t that open about it. It was very oblique.

 

Claire Bidwell-Smith  08:37

How did that feel like you must have just started to see that happening. And like what did that feel like inside as just as an individual?

 

Sunita Puri 

It just felt, I felt really uneasy. And as though some we were doing something that kind of bordered on the unethical. And I think everybody’s intentions were good. I just think nobody was equipped to know how to have these discussions. But it definitely, it felt, and because I was a resident, you know, there is a power dynamic between you and the residents above you and your attending. And so you can’t be the one sometimes to be that transparent with people. So it was kind of a waiting game to get to the point where I could as a senior resident, be the one leading those conversations, but I noticed the lack right away. And I also because I’m a writer, I noticed the just strange language we would use or the way we would medicalized conversations, to keep our distance from people. So for example, saying he has a poor prognosis, or he’s in multi system organ failure. Rather than saying something like his heart and kidneys and lungs are not working. He’s alive because we need life support for each of those. And what that means, what his body is showing us is that he is dying. And that’s just a lot more a kitchen table language and distillation of the things that we know are happening. But try to avoid talking about.

 

Claire Bidwell-Smith  10:14

Yeah, it’s really emotional for me to hear a physician talk about it like this. I mean, I’ve been in this work for a long time, but I came to it because I went through this with my mom, you know, she was very, very sick. And none of the doctors told us that they never told us how sick she really was, or they didn’t use the language that helped us understand what was really happening. And then she died. And for years, I was consumed with regret and sadness that I had not had conversations with her, that I had not been there with her when she died, I had not been prepared, I hadn’t, you know, come to terms with the fact that it was even happening. And so I’ve been doing this grief work all these years, and I see it over and over with my clients, they come to me after they’ve lost a loved one. And all they have to say is I didn’t know I didn’t realize how sick they were, I didn’t realize that we’re actually going to die like the next day or in three weeks. And it has made me really passionate about end of life care and our culture and how we face grief and death. But it’s emotional to hear why do you think this has happened? You know, why do you and I know it is changing a little bit now. There’s people like you and amazing others who are really doing this work. But why are these medical professionals, so ill equipped to have these conversations?

 

Sunita Puri

I think because we are socialized from the beginning, that our job is to save lives. And I think, you know, the media portrayals of what it means to be a heroic doctor. It’s very one dimensional. And so you kind of you have a public watching shows like Grey’s Anatomy, and whatever other dramas are out there now. And then you have, you know, stories in the press about doctors getting sued because somebody died and they were a bad doctor because of that. And then you couple all of that with the fact that we are not talked, it’s not part of the curriculum from the beginning of medical school. And it’s kind of your setup, not to be able to do this well. And I think that’s, you know, the public’s expectations and our expectations of each other are part of that setup as well.

Claire Bidwell-Smith  12:39

Oh, it’s heartbreaking. What do you think? What are you doing personally to change this? What have you started to do, and I think about people like Elisabeth Kubler Ross, who, you know, started really paying attention to dying patients when she was, you know, a doctor in Chicago in the 60s in this way that other doctors around her weren’t paying attention out. They weren’t having these conversations. They weren’t talking to them about the patient’s experience of dying, they were just looking at symptoms. And I always think about what a pioneer she was, but also how hard that must have been to kind of buck the system. And you feel like you’ve done something similar?

Sunita Puri 

Yes. So, I think when I first came into the field, I was very naive and idealistic, about effecting change, what that would look like and at what pace and the very significant power in a hospital of people who bring in a lot more money than palliative care does. And so what I have seen is that, or what I try to do is give voice to my patients and their families, and supportive colleagues through my writing, and interviews like this. And through teaching, so I have a lot of learners who are on my service with me for medical students all the way up to fellows. And so showing them in action, what palliative care is, and showing them kind of the meaning and impact of it because they’re in the room with me. That is I think immeasurably powerful. But the problem that I’ve realized more recently is that you can have all the best intentions, but the institutional culture may not welcome that. And so culture change within medicine is something that I think is going to move very slowly. And that’s the thing that I think is one of the harder aspects of this job, because no one prepares you for that. And that I think is a failing in our field that we don’t prepare our fellows for how to navigate situations where what is right to do for a patient is so obvious, but there’s so many other factors relating to pay politics and money, that make it hard to accomplish that, and then you’re watching this happen and feeling pretty impotent to make things better for them. So it’s a really hard like, when people say, wow, I don’t know how you do it. To me, honestly, the hardship has nothing to do with the subject matter, or the patients or the families, it has to do with the institutions of empower that see us one way when we actually do so much more than what they perceive.

Claire Bidwell-Smith

You wrote a beautiful essay for the New York Times just recently, and it was entitled, we must learn to look at grief, even when we want to run away and you described, some of your early experiences during the pandemic of helping a loved one say goodbye. And could you talk a little bit about that and describe what that was like?

Sunita Puri  16:19

So early on in the pandemic, it was fairly surreal, because, you know, I actually ended up seeing every patient with COVID, who was sick enough to go to the ICU. So quite a lot of patients. And in the beginning, I wasn’t allowed into the ICU because they were trying to keep it understandably, just the ICU teams. And so I was seeing patients on Zoom and talking to their families on Zoom. And because of distancing requirements, my own team wasn’t in the room with me, like several of them were practicing from home. So it was a very lonely isolating place to the work, especially since palliative is so team based. But I think the thing that I was really struck by is that, because we didn’t understand COVID very well, there was extra panic everywhere. That was a part of the experience that I had to manage. And it was very different than people managing uncertainty about having cancer, there was uncertainty in multiple ways here. And so much of what I have to do in my work is to help people manage uncertainty and prepare for all possible scenarios. So for so many reasons, it was just a very disembodied crazy experience. And then, of course, we had people saying goodbye over iPads, not being able to be at their loved one sides. I remember, a friend’s father died in our hospital, and just I had to beg and plead for them to let two people into the room, whereas I think two people could visit but not in the room at the same time. And so, and there was very little I could do, because the rules were so set. So I think there’s a lot of grief that has a new dimension to it because of all of that. And because there were disruptions and all of the rituals of attending the sick bed and a funerals and things like that. And the piece more recently was just kind of about how we’re almost at a million deaths. And that that is so significant in a number of ways. But that also some people are really ready to just move beyond the pandemic and others are very stuck because of their losses and their fears.

Claire Bidwell-Smith  18:52

I think there’s a statistic that says there’s 9 people grieving for every one death. So, a million deaths equals 9 million people grieving.

Sunita Puri 

Yep. And you know, I think grief, and loss, and death, these are subjects that in our culture we turn away from, I think it’s people find it awkward, they don’t know what to say, they say things like, well, time heals all wounds, that sort of stuff, because it’s the best they can come up with. Because we don’t have great language for how to talk about grief or support someone who’s grieving. And you know, those people, I don’t want to bash them and they’re very well intentioned. But I think the fact that there’s no, that we don’t have a way of relating to those in grief in general here in America, I think that’s in a way not surprising, because we don’t know how to talk about death. And if we don’t know how to acknowledge the death happens, even in medicine, then you know, I think that’s where so much begins that it’s like a shadow subject, when it is the one thing every human being is going to experience. We may not all have heart attacks, we may not all have strokes, but we are all going to die.

Claire Bidwell-Smith  20:10

Yeah. You had a couple of beautiful lines, so many actually in that essay, but I pulled a couple out. And I’d love to read them really quick. And just I really liked the way that you looked at this. You said earlier in my career, looking closely at this particular kind of pain was as blinding as looking at the sun. I distracted myself afterward with SNL marathons and slabs of chocolate cake. Eventually, I realized that it wasn’t my job to protect people from their grief or to solve it. How did you come around to that realization?

Sunita Puri 

I think when I was doing my palliative care fellowship, I went from being an internal medicine resident where I saw all kinds of stuff, and where most people I was taking care of, or not dying, to just immersion in suffering and loss and the isolation people experience around it. And I kind of had to realize, probably midway through my fellowship, that if I continued down this road of wanting to be a sponge for everything, everyone, was going through, there was no way I could practice this field. And so you kind of have to have a compassionate detachment where you can see what’s happening and acknowledge it and support people, but you are never going to solve it, there’s so much you may want to do for people, that is the work that they may have to do for themselves. And so I kind of went from wanting to make it all better to saying, you know, this will not be better for a long time, and your life is going to be completely changed by this. But there are ways to cope and I can help talk some strategies with you.

Claire Bidwell-Smith  22:02

That’s a hard part of this work, it’s similar to mine as well. And I remember early on when I was in my kind of my training and I had a supervisor, I would I would come to the end of a session with a client and I, I would just feel so helpless. And I went to my supervisor and I was like I just feel helpless. I want to fix their pain; I want to make it better. And I remember she said to me, you know, just what a gift it is for that client to be able to sit and have someone bear witness and hold their space and their pain for them. And how much of the work is about that you said in your essay to bearing witness is essential to everything I do in palliative care. And it is that, you know, you also did look at one last quote because that there was just so many beautiful, you said, I have learned to look when I want to look away, I’ve chosen to stay when I prefer to run out of the room and cry. The prelude to compassion is the willingness to see. It’s beautiful, but it is, it’s about you know, bearing witness, being willing to look at it being willing to stand there and be part of it. And it’s something that we haven’t taught each other in this culture, we’re not teaching it to our children, we’re not teaching it to our medical professionals. What do you think needs to change and outside of the medical community? You know, what can regular people be thinking about and doing in terms of working towards this change, we really need to see in end of life and grief?

Sunita Puri 

you know, to come from a very spiritual perspective, because that’s I think the way I see this, my answer to this question is, I think it’s coming to understand that the pain you see, and another is your pain. Because we are all united in our humanity and in the brevity of our lives. And so coming to see that someone hurting is everyone hurting. Is a way that I try on the really hard days to remember that being with this person’s pain really matters and knowing I can’t solve it, but and bringing it into the light where we try to keep it in the darkness. Even if that means you know someone you know, saying to their neighbor, I’m so sorry that your husband died. Please let me know how I can support you. Because that acknowledgement enough. I mean, just that acknowledgement is something that I think people really appreciate that it doesn’t require grand gestures or piling casseroles on somebody’s porch. It just means seeing it and being willing to articulate that you’ve seen it. And I think when we get to a point in consciousness on our planet where we can really see ourselves reflected in the pain of another that I think to feel it as if it were your own. That’s where we need to get. And I think in the meantime, you know, there’s been a lot more exposure to grief and loss and the experience because of the pandemic. And my hope is that, you know, we keep that conversation going for a long time, because that’s one of the extraordinarily few byproducts of the pandemic that I think are good for our culture that people are more open about their grief and loss that people like you are, you know, fostering spaces for people to think about loss and talk about it. I mean, on that Times piece, it was remarkable to me how in the comments section, people were just sharing intimate losses with each other, and that the comment section kind of formed its own little support group. Yeah, I don’t know if that would have happened like 10 years ago, I think there’s just more of an openness that we have to seize, and encourage people to talk about what their kids or to, you know, consider doing something for the bereaved like volunteering with hospice, for example. I think everybody should spend a month volunteering with hospice, because then you really kind of see what this shadow world looks like. But also you get us a sense for the ways that it shouldn’t be hidden in the shadows, that this is something that’s very human and the grief that comes with that is something we can bear witness to before it’s our own.

Claire Bidwell-Smith  26:34

How do you feel like during this work has enhanced your life and made your life more meaningful, and like more beautiful or helped you embrace life? And people always think about the death and dying industry or like our, our field, like, oh, that’s got to be so heavy. Like you said earlier, people say it to be all the time too. And that’s not how I feel. But you know, what’s, what’s the other side of that, that people don’t realize?

Sunita Puri

I think just like I think of my space I hold for my patients and families and even some of my colleagues as a very sacred thing. Because what I do, the way I describe it to my patients, is that I’m going to walk you to the riverbank. And that, to me, that final stretch of someone’s life, whether they’re in hospice, or I’m seeing them a couple years before that final stretch. It’s just such a place where fulfillment and joy and bonding can happen. And some of what I end up talking about with my patients is just like joking around about life stuff. We’re talking about current events. And I try very much to make sure that I see and they see that they’re still living no matter what stage of dying they’re in. And I think the public doesn’t, and my friends, other colleagues maybe don’t know what a rich and beautiful thing that is, that it’s not scary to me. I’m not frightened of what my patients say to me, or what they look like when they’re really sick. None of that really shakes me, because I’ve been privy to something much deeper than that. When in my relationships with them, whether it’s like a few hours with a family when someone’s dying in the ICU, or whether it’s a few years. And you know, I think obviously it’s not for everybody. But it has really kind of made me appreciate the brevity of life and also the fact that we don’t know what’s going to happen when. And that’s not, that’s something I knew intellectually, but I’ve started to embrace more with my actions. And for me, that’s meant, you know, really letting go of people in situations that don’t serve me. Because when you think about how short life is and ask yourself, why am I still doing X, Y, and Z? Why is this person’s opinion of me still choking me in a stronghold? And it doesn’t mean to, yeah, because ultimately, I see this with my patients. We are all alone at the end of life. And we are alone, ultimately, in our decision making during life. So being still with myself and saying, I’m not going to do this anymore, because it’s harmful to me, is not I was, I wouldn’t have necessarily done that a few years ago.

Claire Bidwell-Smith 

I’m glad to hear that. I think finding that stillness and that center of who we are, you know, individually and collectively is part of this process. And part of being able to sit with all that uncertainty. I think that the pandemic really gave us a good lesson in sitting with uncertainty. And there’s so much to learn from it, nothing is ever certain. And we really, I think most of us thought it was up until, you know, March of 2020. And here we are kind of, I really hope that, you know, in your essay that you wrote about how people are ready to move on, and I hope that we are going to retain some of these things, these lessons about grief and loss and uncertainty. And, you know, how we how we support each other, there were so many beautiful things that happened during the pandemic, too. But I think we have to keep reminding people that some of the stuff we really still need to sit with and process and that so many people are being forced to sit with it and process it while others are moving on. Yep. Yeah. Do you have hope for moving ahead? What’s to come?

Sunita Puri

I think that, you know, one disappointing thing I’ve at least seen in my practice is that I don’t know that the pandemic really changed people’s willingness to do things like advanced directives, or have these conversations. And that, to me, was a tragedy. So I hope that maybe as we reflect on what happened that people may start to understand that, whether you realized it when you were in it, or whether you realize it a year after the numbers start to fall, that you need to talk to people you love about what you want for yourself, and you need to talk to your doctors to understand what’s realistic to one for yourself in different situations. I don’t think we’re ever going to be out of this. I think that COVID is going to be a part of our lives from now on. And the question is, how can we live fulfilling lives while also respecting the health and safety of others. And I think that’s going to be a political test for our country. And I hope it can move away from that and really be about humans respecting other humans rights to live well, and not be so scared about getting sick. So I think that’s going to be a test for our country, among many other tests that are coming up. And I think we will have another tragedy like this again, this is not going to be the end, unfortunately, a big public health disasters, whether that’s a virus or a war or terrorist attack or inclement weather. And so my other hope is that our health care system will really look at what happened here, and try to make changes to make it more equitable and accessible and fair.

Claire Bidwell-Smith  32:57

On that note, I am profoundly grateful that there are people like you sitting and working with patients and families and making these changes, big and small individual and you know, in your teaching, I’m just so grateful, you know, personally thinking back on my experiences with my parents and thinking about all of my clients and all of the people right now going through everything they’re going through. I’m just I’m so glad there are people like you out there. Thank you, Sunita.

Sunita Puri 

Thank you, Claire, it’s a pleasure to have been here.

Claire Bidwell-Smith

I’m so grateful and honored to be doing this work alongside people like Dr. Puri. Like I’ve said before, I see so many of my clients today struggling with how to move through grief and loss. And I think the more we can educate ourselves and open ourselves up to the subject, we can learn to embrace it and move through it with a little more ease. Thanks for joining me today. If you enjoy listening to conversations like this, I recommend subscribing to NEW DAY on your favorite podcast app so you never miss an episode. And there are three of them every week now. Submit questions for me to answer on upcoming Monday and Wednesday episodes. Email me at newday@lemonadamedia.com or at my online question form at bit.ly/newdayask. You can find the link in the show notes. Alright, that’s enough for today. See you Monday.

CREDITS

NEW DAY is a Lemonada Media Original. The show is produced by Kryssy Pease and Erianna Jiles. Kat Yore is our engineer. Music is by Hannis Brown. Our VP of weekly content is Steve Nelson. And our executive producers are Stephanie Wittels Wachs, Jessica Cordova Kramer, and me, Claire Bidwell Smith. NEW DAY is produced in partnership with the Well Being Trust, The Jed Foundation and Education Development Center. Help others find our show by leaving us a rating and writing a review. Follow us at @LemonadaMedia across all social platforms, or find me at clairebidwellsmith.com. Join our Facebook group to connect with me and fellow NEW DAY listeners at facebook.com/groups/newdaypod. You can also get bonus content and behind the scenes material by subscribing to Lemonada Premium on Apple podcasts.  Thanks for listening. See you next week.