How to talk about death and dying

[MUSIC PLAYING] You're listening to Life Kit from NPR. Hey, it's Maryl. We made it through to the end of 2025. And it has been quite a year, a pretty wild and challenging one for NPR and local stations. But despite the loss of federal funding for public media, despite attacks on the free press, we are still here for you. NPR will not shy away from our first amendment right to editorial independence. And with your support here at Life Kit, we're going to keep bringing you the advice and thoughtful conversations you rely on us for. If you're already an NPR plus supporter, thank you. We see you and we're grateful for you. If you're not, please join the community of public radio supporters right now before the end of the year at plus.npr.org. Signing up unlocks a bunch of perks, like bonus episodes and more, from across NPR's podcasts. Plus, you get to feel good about supporting public media. End the year on a high note and invest in a public service that matters to you. Visit plus.npr.org today. And thank you. About seven years ago, I was in Italy wandering around this gorgeous small town by the sea. And I desperately had to pee. So I popped into a church thinking, that'll probably have a public restroom. There was a sign identifying it as la quesa de burga torio. I quickly found out what that meant. This was a church devoted to the souls in purgatory, which is a concept in Catholicism where you're not in hell, but you're not in heaven yet either. The theme to me, though, really screamed death. Immediately upon entering, I walked past these glass cases. Inside were decomposing bodies, fully dressed and standing up as if in greeting. One was the body of a child. I froze, fixated on the bodies. Were those real? They were. I felt a familiar fear, well up in my chest and be-lined it out of there. The rest of the day and night, I went into an existential spin. Seeing death so starkly presented, so unavoidable, it reminded me that one day, I would be a rotting corpse. And first, I'd have to die, which sounds like a terrible experience. I know we all know this, but I try not to think about it. I was never taught how to think about it in a way that didn't unravel me. In America, we don't like to talk about dying. And when we do, it's sanitized. I think the Hollywood aesthetic and what dying looks like in entertainment does it disservice to what the dying process is really like. This is JS Park, that's his pen name. He's a hospital chaplain at Tampa General Hospital. The joke that I make is that I'm a cross between a priest and a therapist, some a therapist. As a chaplain, he prays with families. And he also does some of the same things as a social worker. He offers crisis assistance and helps them understand what's coming. The thing I hear a lot is, I wish someone had just told me. I wish someone had prepared me for this, what it would be like to see my father die, what it would be like to make this decision for my mother that it's okay if they're no longer on life support. It's okay if I allow them to pass peacefully without all these resuscitation efforts and pushing on the chest. If I just give them some dignity, because amidst all the horror of what dying looks like, we can still confer some dignity to dying. On this episode of LifeKit, what to know and how to talk about dying. We'll touch on the dying process, what it can look like, especially at a hospital. How you can show yourself love if you know you're gonna die soon, and how you can support someone who's dying. We'll also talk about how you can start considering this topic without obsessing about it. And look, death is clearly an uncomfortable topic for me, but I learned a lot from this conversation and it was kind of a relief to say this stuff out loud. I'd love to zero and specifically on dying and the dying process with you today. You know, we all die, but the dying process, nobody wants to talk about that. - Yeah. - Why do you think that is? - Yeah, you know, dying is scary. This particular thing happens with my patients and their families, where someone is facing a hard diagnosis. They've just been told something really tough. And then a family member or even a healthcare worker will jump in and say, "Oh, God's got it." Or, "This happened for a reason." Or, you know, "Don't ask for a lighter load. "Get a stronger spine. "Everything will be all right. Don't cry." That sort of thing. And I think early on as a chaplain, it used to enrage me when I heard those things. clichés, platitudes, one-liners, the spiritual bypassing, because they were completely glossing over this person's pain, their suffering. Their illness, their injury, their fear. And over time, I'm still enraged by it. It still makes me angry. But I feel something else at the same time now. When I see that person saying that, when I hear their words underneath it, what I see is almost like this existential panic that now the entire room is faced with their frailty and mortality. So it's a way of self-soothing. And so, in addition to being mad at those one-liners, I also feel maybe a compassion or an understanding that the reason they're saying this is this is their sort of initial maybe misinformed way of processing and coping with the terror of dying. I was visiting a family friend in the hospital this summer. She was dying, and she was hooked up to a lot of machines. And her color was different. Like, she was like yellow. And I was afraid at first to touch her. You know, like, I didn't know if I would hurt her, if her skin would be really sensitive, or if she was even, she wasn't really conscious, like fully conscious at all. Like, she was sedated. But I think she could feel some things, but she couldn't communicate with us. So I was like, I don't want to be like touching someone who can't move their body or tell you they don't want you to touch them. But also, I want to comfort her, you know, and show affection. And I felt very unprepared for that moment. - Yeah, for one, I'm so sorry to hear that about that loss. - Thanks. - The shock of dying is made doubly painful when we also see the shock of what dying really looks like, what it does to a body. And so when we get family in the waiting room, I'll go to the family and usually what I'll say is, your family member will look a little differently than the last time you saw them. They're still attached to some equipment. I just want you to know that they will look different. And it's okay if you decide not to see them right now. Are you ready to go? And, you know, sometimes they do refuse. But what I've noticed is when I pass that on, when I tell them they'll look differently, when I try to prepare them for the shock of them seeing their loved one, because maybe they just saw them that morning, talking completely okay. And now they're lay inside ways or they're intubated or they're injured. What I notice is those family members in that waiting room when other family starts coming, the people in the waiting room will tell those who just arrived, the thing that I told them, that's sort of gracious disclaimer, saying, hey, I just want you to know, you know, so and so, our loved one, they're gonna look different. It's okay if you don't see them. And I notice that softness is passed on. Just that little bit of disclaimer, just that little bit of language and cushioning and tenderness around it. And so, some of that I wish we had that education, that sort of compassion that's passed on, because it does help. Take away one, the dying process is often painful, and for many of us, it'll also be shocking to witness or experience ourselves, because this is not a topic we tend to talk about until we have to. If you find yourself in a situation where someone close to you is dying, say at a hospital, you can ask others who've seen your loved one, what you can expect when you walk in the room. Is the person hooked up to machines? In what ways do they look different? Will they be conscious? And if you've been in the room already, you can offer this to your friends and family. For anyone who's listening to this, I wonder if you could give them a starting point for what to expect if they have a loved one who is dying, like what dying looks like. They might expect their family member to look like, the smells that they might smell, the way their skin might feel, the reality of that situation. I think one of the things that families are shocked by is the sound of the breathing and almost sounds like this person is hurting. So when someone is being intubated, when they're surgery, when they're being given medicine, people whether they're aware of it or not, they'll fight a lot of the things that are happening. We try to prepare people for, you know, your loved one is breathing, they can't breathe for themselves, that's why they're intubated, but they may be shivering or shaking and we're giving them medication to help with that. And so at least a starting point is to talk about how resilient the body is and pushes back all these medical measures. And so even Agonyl breathing those last breaths that a body takes, it sounds like gasping because it is. This body is still trying to live even as it's dying and it's trying to pull in as much oxygen as it can to keep living even though that person is dying. But I say all that to say, I hope anyone hearing this, if you see your loved one in the hospital and they're intubated or they're getting a procedure, it's natural that they would want to fight that. It's natural that they would want to push back because the body is defending itself. And I think that there's a guilt that comes up because so many families see that and think, my gosh, this is hurting them, should I keep doing this? And I think that's a voice worth listening to. Sometimes it does mean yes, we want this person to be comfortable, we should stop. And at the same time, those interventions, it's going to look ugly, it's going to look really brutal. - What about even beyond the medical interventions, just the process of someone dying, even if they don't have any real, like they're not getting intubated or not trying to resuscitate them or, you know, it's the very final stages. I just don't think a lot of us have seen that. We haven't seen it until we have. - Of course, yeah, you know, bodies are meant to move and there's a certain level of hygiene that we're used to. And when a body is in a hospital for hours, days, weeks that person can't take a shower, they can't keep up with their hygiene, the lack of exercise. If you see a loved one that you haven't seen in a long time and they've been in the hospital for a little while, even just a little while, there will be a certain amount of what looks like deterioration and just an aging and just a lot of damage to that person's body. And I think it's almost like your body is trying on death before it dies. - Take away two. If your loved one is dying, particularly in the hospital, they may not have showered for several days. You'll likely notice them deteriorating and that's to be expected. Towards the very end, you might see them taking long, labored breaths, which is awful to witness because we wanna help our loved ones and support them so they can get better. But at some point, we all do die and we have to surrender in that way. To realize that the best thing we can do for them is make sure they're not in pain and try to show them that we love them. - So given the reality of it, if you are someone who is dying or going to knows that you're going to die soon, what are some ways that you can show yourself love and support? - So a lot of patients, there's quite a few who feel ashamed to call their own family or friends because they're aware of what they look like. They're aware of what's happening to their body. They're aware that they maybe haven't showered in a few days or a few weeks. They're not at their quote unquote best. And so at the same time, what makes such a big difference in our dying and our injury and our illness is community, is having people. And a way that I know that I can love myself is to give myself permission to be seen by the people who love me and by the people that I love. And it's that love that can carry me through the vulnerability of that very naked and difficult process of injury, illness, and dying. And so if I'm at my deathbed a way that I can love myself is to allow myself to be loved. You know, one of the things that we see is patients, their skin getting so dry, lips getting cracked. And I remember one patient saying, look, I've seen my mom die and she just looks so thirsty. Can you tell my family what are my last wishes is, if I'm not awake and alert anymore, can you just tell them to keep putting chapstick on my lips? I don't want to die with dry lips. And like that's such a reasonable request, you know? - Take away three. When it's your time, if you know you're dying, try to allow people to show up for you. You might feel ashamed of how you look, you might not want them to see you like this, but there are people who can hold you while you make this transition. That could be family or friends, and you can also see if your insurance covers hospice care. That'll pull together a team of nurses, doctors, social workers, spiritual advisors, and volunteers who can support you. If you are at the hospital, you can also ask if they have a chaplain or any other resources. And you might have requests like please brush my hair or bring my softest pajamas or bring the cat or bring me lots of chocolate. Let your people know what you want. You are allowed to ask for these things. We'll have more with JS Park after the break. All right, we're back with life kit. I've been talking about the dying process with hospital chaplain, JS Park. What are some ways that friends and family can support someone who's dying? - So each of us, I believe we know the people that we love. And everybody needs differently. And so for some people who, let's say they've lost a loved one, they may want to just have a night off and go out to the movies and get something to eat or they may want to just have a night in and do nothing. They may need somebody to wash all their dishes and back in the house. Or they may need someone just to sit there with them and hear the whole story about their loved one who died. And so everyone has a specific way in which they will be emotionally tended to and which they will feel spiritually filled and seen. I think the important thing is is that we don't burden a person who's hurting with something that we think that they're going to need or by asking so many different questions and almost interrogating them. The text that I feel most bother by is like, "Hey, if you need anything, let me know." Or even like, "How are you doing?" I'm like, "I've told a story 50 times." Yeah, and it's like putting a burden on me to have to try to appease this person's curiosity. But if someone texts me and they're like, "Hey, I can bring you dinner Tuesday or Thursday at six o'clock. Here's the menu, three different things you can pick from." That for me is like what I like, I'm like, cool. All right, I can do Thursday, bring it here, and they're like, "Do you want drop off? Are you going to come in?" And it's like, drop off, you don't have to come at it all. But yeah, everybody's got something different that they need. And I think if we tune in and really listen, we'll know what that is. Take away four. We've talked about this one on the show before. When someone is sick or dying, try to lift the burden of everyday decisions. If you want to help make an offer, hey, I can bring over food or come over and read to you or come to the hospital and tell you about the latest drama at work or rub your back. I think about what skills and resources you have, but also who this person is and what they might appreciate. For instance, you're only going to tell them about your work, drama, if that's something that they would find amusing or comforting. What are some ways to get more exposure or to start thinking about dying and death without obsessing about it? And I think with the hope of helping you talk to someone who is in that situation? I mean, all of us are eventually going to have to start making decisions as we lose autonomy, as we age or if we succumb to illness and injury. What do I want to do with all my stuff? What are decisions I want made for my own body? You know, like chaplains we do in the hospital that I'm at, we assist with advanced directives, which is you pick a decision maker for you. In the case you can't make a decision anymore for yourself and a living will, which is what are your wishes if you God forbid, ever end up on life support? And when I go through these documents, most of my patients, they've never had to talk about this before. And so I think it's important that we confront death in a way about, well, what are the decisions that I would want to be made for me if I can't? How would I want to die if I end up in a hospital or under a care team? I've had patients write in their living will like, can you put pictures of my family all around me as I'm dying? Can you have my dog come in to say goodbye? I want my dog at least to know that I'm dying? Can I have all my utensils from home in my room so I can eat my last meals with my utensils? You know, these little moments of autonomy are what brings some sort of comfort and consolation and death and that affords some dignity for us. And so I think it's important to start having those discussions sooner than later. Let's talk about conversations while a person is dying. When they have maybe a week left or a few days left, sometimes I think in the movies, in particular, they show these big moments where you go and you make amends with somebody or you just like have that conversation, you're finally able to talk to your father in the way you never could or whatever it is. You're at their bedside and I think there might be pressure to have a moment like that or an expectation that you'll get a moment like that. But is that likely? - So it is so rare, in fact, to know that you're having a last conversation with someone where both of you are awake and aware. It is so rare to have that sort of Hollywood momentous, like montage of two people talking and this is the last word and then I die, you know? People as they're dying, they can be kept alive by life support, but they're no longer awake and aware they're no longer conscious. But still, even if it's one sided, you know? My, one of my best friends, John died six years ago in the hospital where I work on my assigned floor and he was about my age and, you know, I didn't know if he could hear me or not, but I still spoke to him and talked to him about my day. And I want to believe that he heard everything I had to say. And so that was my final conversation with him. And I do a thing as a chaplain where if the family's gathered around a deathbed and this person is dying, usually a dying person, they're no longer awake in the Lord, they can no longer communicate. But I'll ask this family, you know, if they want me to do a prayer or, you know, it's like a final last rights type of thing. And what I always ask is before I pray, can you tell me what your love one is like? And they'll all go around the room sharing. And when they share my hope is that this person who's dying gets to hear all the loving ways in which their family is sharing about them. And then in the prayer, I weave almost like a tapestry of all the things that they've said, thanking God for all the ways that God made this person so that they could have these amazing encounters and their lifetime with them. And I hope that my patient who's dying gets to hear that. And so, yeah, even if they can't respond, I think it's still important that as they're dying, we can still tell them everything we always wanted to. - Take away five. You might hope that you'll get a final moment to say goodbye to the people you love. But even if someone doesn't die suddenly, even if they're dying slowly at the hospital, it's rare to know that your last conversation with someone is actually your last conversation. So for one thing, tell people how you feel about them now. If there's something you want to work through together, don't wait. Also though, if your loved one is in a hospital bed, sedated, unable to speak, you can still speak kind words to them and hold their hand. We don't know how much they can hear or what they'll understand, but it doesn't hurt. - J.S., thank you so much for this conversation. - Thank you. All right, it's time for a recap. Take away one. The dying process is often painful. And for many of us, it'll also be shocking to witness or experience because this is not a topic we tend to talk about until we have to. If you're visiting someone who's dying, try to see what information you can get about their current condition before you walk in. Take away two. If your loved one is dying, be prepared for what the process looks like. You might notice changes in their skin color, their breathing and their level of awareness. They may also get agitated among other things. Take away three. When it's your time, if you know you're dying, try to allow people to show up for you and ask for what you want, like having family photos around you or having your pet there. Take away four. Think about what specific skills and help you can offer to your dying loved one. A distraction with good gossip, company while watching old movies, taking care of their dog and take away five. Final conversations with a loved one who's dying are so rarely like what we see in the movies. But even if someone is sedated or they can't really talk, you can still tell them you love them. And this is a good reminder to tell the people in your life that you love them before this moment arrives. That's our show. For more life kit, check out our other episodes. We have one on how to talk to kids about death and another unmanaging your stress around the holidays. Also, we love hearing from you. So if you have episode ideas or feedback you want to share, email us at [email protected]. This episode of Life Kit was produced by Claire Marie Schneider. Our visuals editor is Beck Harlan and our digital editor is Malaga Grieb. Megan Cain is our senior supervising editor and Beth Donovan is our executive producer. Our production team also includes Andy Tagle, Lenin Sherburn, Margaret Serino, and Sylvie Douglas. Engineering support comes from David Greenberg. I'm Mary El Segara. Thanks for listening.