Latest / High Five Hot Mess Podcast / High Five Hot Mess | Help! I Need an Adult: Hospice: What Families Wish They Knew
Transcript
- Lisa Wilson: If I can get through this without crying, it's a win. When I got the call that my mom was going to hospice, I was a designated driver on a wine tour with 25 of my friends we were five wineries in when I got the call. I remember just thinking, I don't understand. I don't get this. Like I just talked to my mom this morning and she was fine. Like she was sick, but she said she didn't feel any worse. So to go from that conversation to she's going into hospice, I was horrified. Right. So my only experience with hospice at the time had been with my dad. He went into hospice, died like two hours later. So in my mind, hospice meant the end was happening right now. I was on a plane the very next day, racing against the clock, just hoping that I made it there on time. But when I got there, everything I thought I knew was wrong. Right. So my mom was awake. She was coherent. She knew exactly who I was. In fact, The first thing she asked me is if I was going on a hot date because my dress was cut so low. Spicy to the end. Two days later, the hospice sent her home. I remember thinking, what do you mean she's going home? She was asking to go outside for a cigarette, and they felt that if she could do that, she could go home. She was also carrying on conversations with an invisible Andre Agassi, so we knew she wasn't really herself anymore. She had declined so much in just those two days. And now they were sending her home? She went home with my brother. I had to fly back to work. So I told her I loved her. She died in my brother's house the next day. For a long time, I was angry. I was angry I wasn't there. I was angry that my mom's experience looked nothing like my dad's. I was angry because I felt like I left too soon. I was angry because I should have pushed harder and done something. But you don't know what you don't know. And that's the part nobody prepares you for, right? Nobody tells you that one day you're gonna be the person making these decisions for the people who used to make all of yours. Nobody hands you a manual that explains what hospice actually is, what questions to ask, or how to know if you're even making the right decision. It's been 16 years, and although time has healed a lot of wounds, I'm clearly still struggling with some of them. But now I'm watching my friends go through the exact same thing. A loved one gets sick. Someone mentions hospice and suddenly they're expected to understand a system they've never had to think about before. And before we start, If you're thinking about skipping this episode because hospice sounds dark or heavy, or it's just not something you have the bandwidth to think about, this episode is actually for you. Because this isn't an episode of really about dying. It's an episode about how you can get ready. And be there and be prepared 100% for the people you love when they need you the very most. Our guest today is Dr. Jordan Grummit. Jordan has spent decades caring for people at the end of life as a hospice physician. He's walked thousands of families through the hardest conversations I'll ever have, helping them navigate fear, regret, and what matters most when time becomes precious. He's the host of Earn and Invest podcast and the author of Taking Stock, The Purpose Code, and the Healthcare Heist. Jordan is our adult in the room today. We are so excited he's back. Because if you're anything like me, you probably think you know what hospice is. And I'm here to tell you there's probably a really good chance you're wrong. So let's get into it. Welcome back, Jordan and Lisa. We're here today talking about what can be a very heavy topic if you don't really understand kind of what it is, which is where a lot of us are at, and that is hospice. So, Jordan, in our last episode, if you guys haven't watched it, make sure you go check it out. It's it's a great episode about how to handle finances for family during a crisis situation. but Jordan, you have an extensive background in hospice care. Lisa Smith: Hi there. Lisa Wilson: But one of the things you said that really landed with me was that you would do it for free if you needed to. Walk me through why you would say something like where is your love for Hossoscare coming from? Jordan Grumet: Well, here's the interesting thing. When I tell people I do hospice work, they say something to the extent of I couldn't do that, that's so hard. I actually say the opposite. I've practiced all sorts of medicine. I've taken care of people in ICUs, in hospitals, and in the offices. I actually find hospice work to be the most uplifting. And the reason why is often people get terminal diagnoses, and the first thing the doctor says is there's nothing more we can do. Think about what those words mean. There's nothing more we can do. Lisa Smith: Mm-hmm. Hmm. Jordan Grumet: And we as the hospice practitioners get to come in and say, No, no, no, no. There's plenty we can do. We can help you with your pain. We can help you with your anxiety. We can make sure that whatever's important in your life, we can try to help you achieve those things. Maybe it's getting you home and that's where you want to die. These are all things we can do for you. And the goal is to help remind people that they're living till the moment they die. So how can we make that time as positive as possible? And so, yeah, I I like to say that death is a period at the end of a sentence. Lisa Smith: Mm. That's a good point. Ahem. Jordan Grumet: it's not a set of quotations. So basically the idea is that, you know, you're living until the moment you die. So let's make that time, you know, really good. And most people I found, even people on their deathbeds, most people wake up each morning with a plan for the day, right? If they're cognizant, there's a person they want to see or something they want to do or a TV show they want to watch. So we try to help people kind of feel those things and be in those moments. Lisa Smith: Mm-hmm. Lisa Wilson: I love that. I personally have had experience with hospice with both my parents, very different experiences, as I talked about in the cold open. hospice is not a place you go, it's a type of care. So Jordan Grumet: It's a philosophy, Lisa Smith: Mm-hmm. Mm-hmm. Jordan Grumet: yes. Lisa Wilson: Right. So the the hospice that you need for your loved one you can't like chat GPT your way out of it. Right. So I really wanted to kind of start with the basics, if that's okay. what is hospice? Jordan Grumet: So hospice is a philosophy of care as well as a service that's provided to patients in the last six months of their life. And so in order to get a hospice consultation, you have to have actually two doctors. One is your primary doctor, whoever's taking care of you in the hospital, say that you have six months or less. And then the hospice team evaluates you, and a hospice doctor certifies that on average you have six months or less. Cause of course, no one knows how sick you're gonna get and how fast. Some people actually are on hospice for years. Lisa Wilson: Mm-hmm. Jordan Grumet: Although that's frowned upon by the government, and some people are on just hospice for days. Pretty much almost any disease process can qualify you for hospices as long as it's terminal. So we take care of people with emphysema and congestive heart failure and cancers and dementia, Parkinson's disease, pretty much you name it, if it can eventually make you sick enough that you can die from it, you can be on hospice for it. And again, it's a philosophy, it's not a place. So you can receive hospice in the hospital, you can receive Hospice at home, you can receive hospice in a nursing home, and most hospices will follow you. So if you're in the hospital, they might come meet you there. You may get signed up for hospice, and then you might go from there home, and then they'll come see you at home. They help provide the equipment for you, the medicines for you, as well as provide nurses that come see you. Now, this is not a 24-7 nurse. This is a nurse that comes sees you a few times a week, maybe some certified nursing assistants who can come and help with bathing, but it is not 24-7 care. So this very much surprises. Lisa Smith: Hmm. Lisa Wilson: Mm. Jordan Grumet: People, you still need to have some type of care, whether that's paying for hospital care through insurance, or that's living in a nursing home, or that's being at home, but you have to hire caregivers. So the hospice actually is a benefit that's provided by Medicare mostly. So Medicare provides the hospice benefit. It actually takes the place of the normal Medicare you get when you're not dying, and it provides for things like medicines, equipment, and care. Lisa Smith: Hmm. And does hospice also cover like clergy, any sort of like religious type services as well? Jordan Grumet: Yes. So every hospice team has to have at least some type of chaplaincy. so it could be a clergy member, it could be a rabbi, it's someone who's trained and they go out and see the patient. So the hospice team is usually a nurse, a doctor, certified nursing assistant, so people who come in and help do things like bathing, social work, Lisa Smith: Okay. Mm-hmm. Okay. Jordan Grumet: chaplains, those are kind of the must haves. Now some hospices will have massage therapists, some hospices will have a physical therapist or an occupational therapist for some basic things. In the old days when hospices were better funded, we had some of them had music therapists. One of them that I worked at had a Reiki therapist. And so different hospices provide different things, but there are kind of strict rules. So hospice can only provide a certain suite of things that Medicare says it's okay to provide. Lisa Smith: Wow. Wow. Lisa Wilson: Mm. So one of the things that I really enjoyed about hospice, and I know that sounds like a crazy sentence, but you guys, it really is when you've been on solo dealing with a a ill loved one, to have hospice show up for like for me, it was I got all my questions answered. Like, you know, I was able to talk to the nurses and everyone was so kind and you know, we're just just want to make your your loved one comfortable. I mean, as weird as your questions might be, and you guys, when someone is at end of life, you have a lot of weird questions that you're not sure what this means or what that means, I think that there's a lot of misconceptions around what hospice is and is not. we know a lot of people only know what they see in movies, they don't have personal experience with it. And I'm sure Jordan. You encountered that all the time and encounter it like what do you think is the biggest misconception about hospice Jordan Grumet: So, what people Lisa Wilson: that if Jordan Grumet: don't really realize is hospice care is about dignity. And unfortunately, it's one of the few places in our medical system that is about dignity, right? Everywhere else, it's like throw on this gown and be scantily covered. It's like get this chemotherapy that's gonna make you sick. It's like tell you what you have to do and not ask you what you wanna do. Hospice is the exact opposite. It's about dignity. In a sense, it's slow medicine. It's about sitting with people, talking to them. It's about having all those conversations that no other healthcare practitioner wants to. Lisa Smith: Hmm. Yeah. Jordan Grumet: have with you. It's about what is the meaning of life and what is death gonna feel like and how are we gonna make sure that our loved one is comfortable and what happens to me when my spouse dies and what kind of support will I get in the months afterwards and what's important for us to do in these last days and weeks so that we don't have regret or shame or guilt. All of these are conversations we do a really particularly bad job of in most of medicine. And yet hospice is the one place where we have permission. And I think there's this Problem, especially in American society, where we don't really do well with death and dying. And one of the reasons is we haven't really ever been provided a good framework to talk about these things, to be frank, to be open, and to have these conversations, especially with someone who is dying. It can be very dignified and instruct and instructful to be able to. Lisa Smith: That's a good point. Jordan Grumet: hear what's on their mind and what does dignity look like for them and where do they want to die and how do they wanna die and what what does the best case scenario look like. And so hospice is meant to feel comforting and welcoming and very different, I think, than the rest of kind of our healthcare system. Lisa Wilson: Yeah. Lisa Smith: Well, and is there also during that process, you know, ways that hospice can help the family? know, as Lisa was just talking about how she felt very supported by the hospice, Jordan Grumet: Hospices Lisa Smith: you know, Jordan Grumet: don't just take care of the patient. really they engage the whole family. That's why chaplains come to people's houses. That's why social workers come to people's houses. That's why the nurses spend lots of time not just talking to the patients, but talking to their families. That's why they're actually almost every hospice has a bereavement coordinator and has bereavement services that last six to twelve months after a patient has died. Lisa Smith: Hmm. Jordan Grumet: That's why the social worker comes in and starts talking to you before someone dies about funeral services. It sounds morbid, but believe it or not, what is a family member going to stress about? They want to know what do I do? How do I know when my family member died? What do I do? Who do I call? Do I call an ambulance? What happens next? And social work comes in, and when a patient dies in hospice, usually a nurse or social worker comes that night. Lisa Smith: Mmm. Mm-mm. Mm. Jordan Grumet: sits with them, calls the funeral services, directs everything, stays with the family until the loved one has made their way to the funeral home. It's just a lot of help and hand holding and and support. Lisa Smith: Mmm. Lisa Wilson: I try to say really positive things about it I'll give you guys an example. So I was in a meeting with an executive at work and her dad was really sick. And she's literally off the phone from this call saying, he has to go to hospice. I'm not ready to give up. And starts asking me to Google, like, what is palliative care? she just had lost Lisa Smith: amazing. Lisa Wilson: trust or faith in the doctors. But I think what it comes down to is guilt. I think people have hospice guilt, right? they're by allowing someone to go into hospice care, they're giving up on them. Jordan Grumet: it's not just remember, it's not just them. It's actually the language we use in our healthcare system. Again, we say there's nothing we can do. What do you say euphemistically when a person is on life support and we decide to take the ventilator out? We say we're pulling the plug. Lisa Smith: Yeah. pulling the Lisa Wilson: Mm. Jordan Grumet: Yeah. How are you not supposed to be guilty when someone asks, should we stop all this? Yes or no? And you say yes and say, okay, you've given us permission to pull the plug. How are we not supposed to be guilty? Has anyone ever realized, and I've started saying, well, you know, in a sense, you're not pulling the plug, you're setting them free. Like this is, you know, end of life, people don't realize our healthcare system can be a runaway train of horrors if you are terminal and yet you get maximal medicine and maximal treatment. We sometimes can prolong people's days, but that quality of care can be really, really, really poor. Lisa Smith: Mm. Mm-hmm. Jordan Grumet: And no one is served by that. Instead of having family members die quietly at home with their loved ones surrounded, people are witnessing their family members die in an ICU with tubes, with blood draws, with shocking when the heart stops. All of these things create trauma. And that person, here's the thing I like to tell people in hospice, you know, the suffering of the patient ends. Like they die and their suffering is over. But the suffering from the family can last decades after. And that's why hospitals. Lisa Wilson: Correct. Jordan Grumet: Is so important, is we need to have these conversations. We need to help family members remember that they're doing everything they can. The death is incredibly natural. And by listening to your family member, and when they are saying enough is enough, not doing more is actually dignified. And at this most important part of time of their life, you're actually giving what you can, which is dignity and love and support. Lisa Wilson: Mm. Jordan Grumet: People don't realize that and our healthcare system certainly doesn't give those narratives. but in hospice that's more what we talk about. This idea of supporting people, giving them a dignified death. Lisa Smith: So true. Jordan Grumet: Following their instructions, letting them have the death that they feel is most natural, and helping those family members so that they eventually can look back with joy of the good memories, instead of having it all be clouded by the horrendous memories they have right at the end of the life, and then the guilt they carry with them for decades. Lisa Smith: It feels like hospice allows you also to maybe just slow down and take a breath a little bit, right? Because If your loved one is able to go home and go on to hospice, if that's an option instead of staying in a hospital or rehabilitation center that, you know, Lisa Wilson: Mm. Lisa Smith: they're not able to be where they want to be and around family and things like that. know that hospice can go to these places, but yeah, if there's an option that that absolutely makes sense. Lisa Wilson: So one of the things that so of course I've, you know, sent out a quiz to all our friends. Like, what questions do you have on hospice? The number one question you've already answered is who pays for hospice? Like people just don't know that and they're they aren't even experiencing Medicare yet. So they they don't know, right? So that's good. And then the second one was Lisa Smith: Mm-hmm. Jordan Grumet: Medicare your insurer. Yep. Lisa Smith: Mm-hmm. Lisa Wilson: How do families know when it's time for hospice? And right off the bat, I'm like, well, their doctor will tell them, but from your perspective, how do you how do you come to terms with the fact that it's it is time for them to go to hospice? Jordan Grumet: Well, a lot of it deals with prognosis. And one problem again in medicine is we're really horrible at prognosis. There are prognostic indicators. This is why oncologists can look at a cancer, see how far it's spread, and say, you know, your six-month survival is this, or your one-year survival is this. What I like to remind people when we get to that terminal stage is I like to do what I call basically erasing false uncertainty. So the problem is a lot of times when patients have terminal diagnoses, the families are convinced if we just do this right thing, everything's gonna turn around. Like if we just get that extra chemotherapy, if we just take them to the right doctor, if we just give them the Ivy fluids, all of a sudden everything's gonna turn around. So the first thing I try to do as a hospital practitioner is say, death is pretty much certain. And so we're not talking about if, we're talking about when. And so there's this period of time, and we don't know how long that's gonna be. It could be a week, it could be a month, it could be six months. We know death's coming, we don't know when. So the question is: how are things gonna feel between today and that day? Are they gonna be filled with medical tests and hospitalizations and those kind of things? Or are they gonna be filled with staying at home and being around family and trying to get your symptoms managed in a more comfortable setting. Now we have plenty of patients who say, you know what? I'm young or I don't quite believe this yet. And for them, dignity is fighting. And so for that person, it may not be the right time. Lisa Smith: Yeah. Mm, that's a good point. Jordan Grumet: But a lot of times we have family members who feel guilty, but then when you actually go in and talk to the patient, they're like, Yeah, I'm done. I don't want any more chemotherapy. I don't want the nausea. I don't I don't want my last days to feel horrible. I'm willing to live one week instead of three, but I want that one week to be free of nausea and where I want to be. Lisa Wilson: Yeah, that was that was that was my mom for sure. Lisa Smith: Mm-hmm. Yeah. Jordan Grumet: And so those are the real conversations we need to have. So assuming someone has a terminal diagnosis and a doctor looks at them and says, okay, at least based on diagnosis here, you know, you have six months or less, then it's really more a conversation with the family and with a patient and the family. And if the patient is unable to express an opinion, then it becomes more of a standard of, okay. So dad is unconscious, and dad can't talk for himself right now. But let's imagine dad 10 years ago, and dad is standing right next to us looking down on himself in this bed. What would he choose for himself? And if the and you'd be amazed at how many people want to go, go go a treat-treat treat, and then you ask them that question, and they sit back and they go, Yeah, he'd never want this. And then we start getting back to dignity. It's like, well. Lisa Wilson: Mm. Jordan Grumet: Death is coming, we can't change that, but we certainly can try to provide dignity at the end of life. What does that look like for your father? And that's where we really get in the conversations of do we really want that extra chemo when they're in bed and they're not talking to us and they're unconscious? Is that really that extra radiation treatment really gonna help? And they're difficult conversations, but the problem is we're not good at having these conversations. In a perfect world, we would have these conversations with our loved one way before they had a terminal illness. It would be part of that yearly physical where we talk could talk about their advanced directives and we'd ask them, what's more important to you, quantity or quality? Would you want two extra months in the ICU uncomfortable? Or would you settle for one month but be at home and have hospice care? Like Lisa Smith: Bye. Jordan Grumet: What's more important to you? If we start those conversations early, what we're doing actually is something I call pre-mourning. By having those conversations and finding out what people want and talking about dignity, we're starting to pre-mourn the eventuality that whenever you love someone, one of us is gonna suffer loss. If I love you, either you're gonna lose me or I'm gonna lose you. It's just the human condition. Lisa Smith: Hmm. Lisa Wilson: Right. Lisa Smith: her. Jordan Grumet: And so, how do we start having these conversations and creating a safe structure to talk about these things without it destroying us? Because what tends to happen is no one ever talks about it. And then you find yourself in the ICU and still no one talks about it. And instead of taking all of the sadness, this fear, this uncertainty, and creating safe ways to talk about it out in the world, most people just swallow it inside, and then their loved one dies and it destroys them. Lisa Smith: Mm-hmm. Lisa Wilson: Mm. Lisa Smith: Mm-hmm. Jordan Grumet: Guilt, it causes them sadness, and they suffer, like I said, for years, for decades with these feelings of guilt. We need to create more of an external housing, an external structure for us to actually have these conversations because they're painful and difficult. But when we put them out there in the world, surrounded by people who can share them with you, we actually dissipate all that pain and fear in a really healthy way. And unfortunately, we've gotten away from that. Lisa Wilson: Normalization, I think, is so important, right? I was talking to Doug the other day at lunch, and we just we did all of our power of attorney stuff, Jordan, and all of our will and our trust. We have it all, we're all mapping it out over lunch. I have an emergency bracelet that if I'm incapacitated in any way. Lisa Smith: Yeah. Yeah. Lisa Wilson: No opioids Just because I had such a bad experience with the opioids with my dad. I don't want any opioids. Use anything but an opioid without my express permission, verbal permission. And he was like, I'm gonna need you to overwrite that because if you're in hospice, you're gonna need opioids, Lisa. Like, we gotta figure this out. And I was like, I never thought of that. Like, I never thought, like, if I'm end of life, yes, use the opioids, like use whatever you need to use, right? But Lisa Smith: You Jordan Grumet: Yeah, yeah, yeah. Lisa Wilson: All of my written guidance, it says something completely different. So like you gotta start having these conversations because you think you know what you're gonna do, but when you are grieving and in the middle of it, you have you have no idea how you're actually gonna respond to this situation until you're in it. So have those conversations like Jordan recommended earlier, have them now. Start trying to figure out ways to normalize these really kind of heavy conversations, right? Lisa Smith: Yeah. if you are opening it up as a family, you can kind of gauge where some of the reaction and the responses are to it, too. Some people are going to have a lot harder time accepting if a parent does want to just go home and take that week. Right. And you can maybe get some of those conversations out a little sooner and kind of talk through like the fear of it and things like that. think just again, having the conversation is the first step. Jordan Grumet: Yeah, and it it again, we're talking about relieving the guild. And so, right, my father died when I was seven years old and he was forty and he died suddenly. And so I think a lot about that and kind of the trauma it caused in my family. So as I had children, you know, I had a lot of frank conversations with them. Things like especially my kids are eighteen and twenty-one, you know, I I kind of at some point sat them down and said, You know what? Lisa Smith: Yeah. Jordan Grumet: If I die, it's fine. I've had a magical life. I've gotten to see you grow up. Like, don't worry about me. You're gonna be sad, but move on with your life. That's like my legacy to you, is that, you know, I parented you and I loved you, and you're gonna have that for the rest of your life, whether I'm here or not. So like don't let something happening to me ruin your life. Like Lisa Smith: Mmm. Lisa Wilson: Mm. Lisa Smith: Mm-hmm. Jordan Grumet: those kind of conversations, you'd be amazed that if we can create some of those, both before someone gets sick, but also start having those conversations when people do get sick, how much better those who remain will do. Lisa Smith: Yeah, it's such a good point. It's such a good point because I think I didn't realize some of the conversations that we needed to have until we were in ICU, until we were like in the thick of things. And then it started, it starts dumping on you and you, you don't know what to do. And so it's taught me a lot, just unfortunately, Jordan Grumet: Yeah. Lisa Smith: by experience to start having those conversations for myself as well. Having that conversation with my child and my family so they know about what I would want. I didn't even think about telling anyone what I would want, you know? Jordan Grumet: Yeah. I think it's important. And then once you're in the situation, I think we all feel like there's all these things we can do. But I'll tell you, after practicing medicine long enough, I realize, you know, people sometimes just die when it's their time. Lisa Wilson: Mm. Jordan Grumet: You have to let yourself off the hook and realize, no, you were there and you had the best of intentions and you loved this person who was important to you, but ultimately when it was time, it was time. And it's not like your fault and it's not that you didn't make the right decision. You did the best you could in the situation you were in, and whatever will be will be. And sometimes we don't have control over all those things, and that's totally okay. Lisa Wilson: one of the things that another thing that kind of came through today from one of my friends, a hospice came up in a conversation for one of her loved ones. And she was like, I don't even do I go visit the center first? what is the expectation of me? And then she was like, Can you ask Jordan to walk through like the typical first visit just so that I would know what would I would need to do to prepare? Jordan Grumet: first of all, as a patient or a family, really it's a phone call or asking. So if you're in the hospital, it's asking the doctor taking care of your family member for a hospice consult. If you're at home, it's literally, you know, getting recommendations, talking to people finding the hospices in your area and calling one. They will come to you. And usually it is so usually you get some version of a nurse or an admissions person who will come in, they'll explain to you hospice philosophy, they'll take a quick look at your loved one, they'll get an idea whether they qualify or not, whether they're appropriate or not, they'll describe the services. Remember, hospice is a philosophy, it's not a place. So they'll talk about all the different various places you can get hospice in depending on what your family needs. And if that, if if you had a doctor, someone so either you self-refer, and then we, you know, the hospice will call your primary care doctor or call your oncologist and get an okay from them. And then your information will be given from the admissions person to the attending physician for the hospice team, and they will listen to the story and certify if they believe that your family member also is a terminal patient. And then there are things like consents to fulfill out, right? Because you need to sign consents because you're literally moving from regular Medicare to the hospice Medicare benefit. So all of that needs signatures, et cetera. and then while they're doing this, the admissions person is assessing what equipment you might need, especially if you're at home, what equipment you need, what medicines are necessary. They go through all your medicines, they call the doctor, they discuss which ones are necessary, which ones aren't. They think about pain control, nausea control, anxiety control. Lisa Smith: Mm-hmm. Jordan Grumet: And then once the admission takes place, your actual nurse who's gonna take care of that family member will come at some point over the next few days. The CNAs will come, usually a social worker or a chaplain will contact you and start offering their services, or they'll come and they'll meet you or at least have a phone conversation. But really the first thing you have to do is just make contacts, say you want this referral and either call yourself or have a medical practitioner Lisa Wilson: Mm. Jordan Grumet: call for you, and then they come to you and kind of start the whole process. Lisa Smith: Start the process. Lisa Wilson: And I forgot all about that. Until you're going through it, I literally only remember like my dad was in the hospital and then he was in hospice. And I I was present for everything you just went through, but I don't remember any of it because you're so Yeah. Yeah. Jordan Grumet: Well, you're shocked, right? It's traumatic Lisa Smith: Mm-hmm. Jordan Grumet: and you're afraid and you don't know what comes next. This is for me, this is second nature because I see it all the time, but for your average person, they've never gone through this before. So everything is scary and new. And the great thing is you really they've done this dance a million times. You don't have to be emotionally available to keep it all together. All you have to do is be present. They're gonna ask you lots of questions. They're gonna try to divine what's best for your family member with your and that family member's help. And then the process kind of starts rolling. And again, this is what we do. This is what hospices do. So they know exactly how to implement care and how to get things started. And a lot of it is you figuring, I forgot to ask this, or how does this happen? And then so you Lisa Smith: Yeah. Jordan Grumet: you call and ask or you talk to your nurse when they come over. Or you talk to the chaplain or the social worker. Pretty much almost every hospice worker knows how most things work in hospice. And so you can almost ask anyone. Lisa Wilson: In general, this was another question I got. Did do do people that are referred to hospice, do they often say, I don't want to go to hospice? Okay. Right. Jordan Grumet: pretty rare because they don't even consult us. If someone is adamant, I don't want hospice care, we would never want to foist care on someone they don't want. What more happens is a family calls and says we'd like the hospice to see, but don't use the hospice word. Don't tell them their terminal. and we see that especially with some older families and some immigrant families. Lisa Wilson: Right. Lisa Smith: Yeah. Lisa Wilson: Okay. Okay. Jordan Grumet: We don't sugarcoat things, and our responsibility is to the patient more than it is to the family, because there are specific patients. So we might not say, You're dying, you're on hospice, but if patients ask, so what'll happen is the family says, Don't talk about it, don't tell them about the prognosis, et cetera. And then the nurse goes in and after everyone leaves, the patient will ask, say, So am I dying or what's happening? Like, and we do. It is our responsibility to actually talk to them and be truthful and answer them. but If a patient truly doesn't want hospice, most of the time if we're called by family, that's when you have a family meeting and the social work on the chaplain come and really assess. And if if a patient truly doesn't want it, we don't wanna provide that service. Remember, we're we're about dignity and dignity means having choices, if possible. and s Lisa Smith: Hmm. Lisa Wilson: Well, and I think that hospice is not a place as the biggest light bulb I had. if we'd had approached it you can do this at home, you can do this anywhere, you're comfortable, and here's how we're gonna do that. I but I don't feel like I don't remember being given a choice. But again, I'm sure I was. I just don't remember it. Lisa Smith: Mm-hmm. Lisa Wilson: It's one of those things, this is all part of the preparation work, you know, that we kind of go into to like say, okay, worst case scenario, here's what's gonna happen. Best case scenario, here's what's gonna happen. And here's our plan. Does everyone agree? kind of like when you draw a escape plan from your house in case of a fire. Why aren't we having conversations like this? Lisa Smith: hahaha Jordan Grumet: No one wants to talk about their death. but you know, the other side of it is if you truly wanna have a death that feels fitting for you, right? With all the things so we have almost no control, right? You get sick, you have no control over that, the cancer doesn't get better, you have no control over it. So what do have agency over? Actually, you have agency over what you choose Lisa Wilson: Right. Lisa Smith: Mm-hmm. Jordan Grumet: to get and not get at the end of life. And so people don't want to talk about it but it's scary. But I would flip the switch and say, Yeah, but here's one chance you actually have to have some agency, to have some say over what happens to you. Like, do you want that chemotherapy or don't you want that chemotherapy? Do you wanna die at home with nurses or do you wanna be in a nursing home? Lisa Smith: I love that. Jordan Grumet: You know, do you wanna be hazed out on lorazepam and morphine 'cause you're in pain? Or are you willing to have some pain so that you can be more cognizant and talk to your family members? Like those are all things you have some agency over, but you can't have agency over them if you're afraid to talk about much easier to talk about it before you're sick. Once you're in the middle of crisis, it's just much harder. Lisa Smith: much harder. I mean, and all of these details, I think, start to just add up, right? But there's such a really beautiful part of hospice, the emotional part, the part where you get to have these really amazing conversations with your patients. You call it a life review. And you've written about it, you've talked a lot about it. I would love to have you explain what that looks like. Jordan Grumet: Well so in hospice our philosophy again is to give patients dignity, which means taking care of their symptoms, right? People don't only have physical needs, they have psychological needs. And as you get closer to the end of life, for a lot of people, there's a need to come to some understanding of what it all meant and what they went through and what their legacy is going to be. And so hospice nurses and chaplains and social workers are trained to do something called a life review. It's a series structured questionnaire that takes people through different parts and times of their life and asks. Lisa Smith: Mm-hmm. Jordan Grumet: Big questions like, what was your happiest moment in childhood? What was your biggest trauma of childhood? Who are the important people for you growing up? You know, what were those key things you learned? What were the things you regret? But not only about the past, but about the present and future. What's your biggest fear about dying? What do you fear is gonna happen to your family members? What do you think is gonna happen to your pets? Like all these kinds of things are things people want to talk about. And the idea is. Lisa Smith: Hmm. Jordan Grumet: to kind of close the loop, right? So that people can come to terms with who they were and what they're about. And if they have any last regrets, can we mitigate them? Like I never talked to that person again. They were really important in my life. Well do you want to call them while you still have a few months left? you know, I always dreamed of being a baseball player and I never made it to the major leagues. Well, you know, you're still kind of moving around. Do we want to get you to one last baseball game? Lisa Smith: Mm-hmm. Lisa Wilson: Yeah. Lisa Smith: Hmm. Jordan Grumet: All of those things are possible and so the life review really gives a chance for people to talk about their lives, talk about their regrets, talk about their triumphs, and I think it helps bring people peace as they get closer to the end. Lisa Smith: I don't know why I would love to do a life review right now and see if there's something. Jordan Grumet: And there's no reason that you can't. I always tell people like in in my last book, The Purpose Code, we actually do put questionnaire in there, which is a full life review. It was from a website Lisa Smith: Mmm. Jordan Grumet: called Continua and they do a really nice life review. All you have to do is Google hospice life review. You can find it. but there are many sources of these questions and a lot of them will take you through like some questions about childhood, some questions about young adulthood, some questions about the present and illness, some questions about the future. But they're out there and it would not be a bad thing to maybe do something like that once a year, especially the regrets question. 'Cause I always kinda say, Well, if you know at the age of forty or fifty you have a regret, you now have some agency and some time to work on that, whereas when you're on your deathbed you might not. So I think it's a great practice. Lisa Smith: Yeah. Yeah, I always say, I wish I would have done that. I wish I would have done that last year. I wish I would have done that. You know, I'm going to do that next year and then, you know, 10 years later. Jordan Grumet: So that's what I call a people ask me all the time, how do I know what purpose looks like in my life? And I say, well, you don't find purpose, you build it, but you build it based on these inklings of things that are important to you. And regrets are what I call a great purpose anchor, right? It's something to anchor building a life of purpose around. So I know about 10 years ago, I realized I was taking care of hospice patients, and I really started thinking about it, said, you know what, I'd really regret if I didn't traditionally publish a book. Lisa Smith: Mmm. Mm. Jordan Grumet: And that was really a clarifying moment for me. It's like, okay, well, if I'm gonna regret that and I'm kind of young and I'm healthy, now's the time to turn that into purpose. Now, of course, that was the easy part, was thinking about what is a good purpose anchor. The hard part was then I had to build a life of purpose around it, which means I had to decide what did I want to write about, and I had to build an outline, and I had to learn how to write a book, and I had to get an agent, and I had to talk to other people who had written books, and I had to do some research. All of that was kind of that hard work of purpose. Lisa Wilson: Mm. Jordan Grumet: But believe it or not, the easier part was trying to figure out what a purpose anchor is. And a life review is a great way to start thinking about what your purpose anchors are today, so you can start pursuing those things before it's too late, before you meet a guy like me walking into your hospital room and talking about a terminal diagnosis. Lisa Smith: day. Lisa Wilson: Yeah. So the life review and the purpose anchor. I mean we could have have a whole episode on just those two things. if you're someone like me who's really been like trying to figure out what my purpose has been for the past twelve months, and that review really tries to put into perspective well Lisa Smith: Yeah, that's such a good point. I know. Lisa Wilson: If today was the last day, what would you miss that you hadn't done? But I gotta tell you, Jordan, most of the questions that we got from our listeners was Jordan Grumet: Yeah. Lisa Wilson: around regret. Like they want to know from as a hospice doctor, what did you learn from your patients? Like what do they request what did they regret the most? what do you think was their most resounding? Most consistent request. Jordan Grumet: So this comes from my experience, but also a book by Bronnie Ware called The Five Regrets of the Dying. She's a palliative care nurse and basically interviewed all sorts of dying people and wrote about what she found the big top five regrets are. What I always tell people is generally your regret is personal to you because it depends on what was important to you. What were kind of those inklings, those whisperings, those important things in your life. Lisa Smith: Yeah. Jordan Grumet: But at some point people say, I really regret I never had the energy, courage, or time to. And that's when they fill in the blank with that personal point. So Brodie Weir says something to the extent of people regret that they never had the courage to be the best version of themselves. Right? We regret that we work too much. We regret that we didn't connect with family more. Lisa Smith: Mm. That's loaded. Mm-hmm. Jordan Grumet: But a lot of times we regret that we didn't live a life that was true to ourselves. And this very much gets to purpose because again, we're talking about what lights you up and what is exciting to you. Not what big goal you can meet, but what do you actually enjoy doing? And are you having the courage to pursue those things? Because people give all sorts of reasons why they're not pursuing purpose. They say, I don't have enough money, but most studies show that money and purpose and happiness actually aren't related. Most of the studies show that the thing that really causes people to be happy is connecting to other people. And the way you connect to other people is you do things that excite you and it binds you to other people who have similar interests. And so it's not money. And people say they don't have enough time, but the Bureau of Labor Statistics does the American Times survey every year and says your average person has somewhere between four and a half and five hours of free time every day, even people from lower socioeconomic classes. Mostly it's courage. This idea of doing things that are deeply important to you is scary. And unfortunately, many people aren't jolted out of that fear until they're given a terminal diagnosis. And then it's almost too late. Lisa Smith: true. Hmm. Lisa Wilson: Yeah. I mean, so I think that that is live with no regrets. I don't often pause to say, you know, am I doing what I think is best or am I doing what lights me up? Lisa Smith: Live with no regrets. Jordan Grumet: Yeah. Lisa Wilson: Yeah. Lisa Smith: And it's taking risks too. to have the courage to do something that you haven't done before or that you think is too going to be too hard or to your point, going to cost too much money, take too much time. You have to take that risk and just try. Jordan Grumet: because when you die, you'll do a life review and you'll look back and say, man, did I fight hard. Man, were these things that were important to me and I didn't put them off and I didn't make excuses and I had courage to enter the arena, even though I knew I was gonna get my butt kicked. And that's like those are the people who tend to die good deaths, right? Because when you stop being so afraid of regret and build purpose. You know, you tend to die the way you lived. And if you lived a life that was courageous and exciting and waking up on days excited to do things and doing things you love the process of doing, you tend to die with that same sense of peace and excitement. You'd be amazed. Lisa Smith: Hmm. Yeah, that is what I was going to ask as well, because as scary as it is to hear the words hospice for family members, a patient hearing that and thinking, here it is, right? Here's our time. You talked about being very honest with the patient, being very forthcoming. Can you explain a little bit about some of the things that they would ask you about as it relates to death and dying. Jordan Grumet: I think people wonder how long they have, right? That's always a big one, which is very hard to answer. They're worried about pain, like will I be in pain? they're worried about that they're making a mistake. Like, maybe there is a treatment and I'm just not looking hard enough. Lisa Smith: Okay. Mmm. Jordan Grumet: You'd be amazed at how stoic people usually are. First and foremost, most people, when they're finally told they're dying, they know it already. They've been through the chemotherapy, they see it's not working, they've been gasping for air from their congestive heart failure or emphysema. They know. They've watched, they've seen how they were able to do things before and they're not now. A lot of times they're tired because they've gone through extensive medical treatment. They've been in and out of ICUs, they've they've dealt with the bad stuff. Lisa Wilson: Mm. Lisa Smith: Mm. Jordan Grumet: And so believe it or not, my experience is a good deal of people kind of already know and accept, right? People who are anxious again, you tend to die the way you live. So if you're an anxious person who didn't face reality in life, you're probably gonna be that same anxious person who doesn't face reality in death. And we as healthcare practitioners know it's like, well, you know, we're not gonna change your nature. We're gonna meet you where you are and try to provide whatever comfort we can at that place. Lisa Smith: Hmm. Jordan Grumet: But you'd be amazed. I mean, I still feel that it's more families that struggle, sometimes more than the patients, because the patients are the ones actually feeling the pain and discomfort and they've had to come to terms with their brain. But the family members aren't there feeling every pinprick. They're not, you know, being woken up in the middle of the night. They're not suffering the indignity of having someone to change you when you soil yourself. Like your family members aren't feeling all that the way you do. And so it's a very different experience. Lisa Smith: Yeah. Lisa Wilson: Mm-hmm. Jordan Grumet: what I always say about hospice deaths, which really surprises people, so maybe something that'll surprise you more surprise your listeners more than anything is, you know, death is often pretty quiet. Like Lisa Smith: Hmm. Jordan Grumet: It's mostly quietly with family members around you with pain medicines on board, with anxiety medicines on board. It's not the thrashing and struggling you've generally see in movies and things like that. No, occasionally there are people who die uncomfortable. Most people die fairly quietly and their body s slowly slows down and then they float away. And that's actually most of death and dying. And I don't think people know that. Lisa Wilson: Yeah. Lisa Smith: That's a good- Lisa Wilson: Yeah, they don't most people don't want to be present for it. And then we we, you know, don't want to talk about it because we don't want to jinx ourselves. That's the biggest one that I heard from my parents. They thought it was bad luck. Yes. Yes. Lisa Smith: Hmm. They thought that they were jinxing themselves if they talked about it? Okay. Jordan Grumet: again, this is why we as hospice people and and physicians have to really help people dispel that false uncertainty. It's like, no, like when you get sick, you get sick, and there's no bit of talking or not talking about it that's gonna make it go away. Just like that last chemotherapy when you're barely conscious and you haven't eaten for a week isn't gonna help you. Like, it's just not. Like Lisa Wilson: Yes. Lisa Smith: Mm-hmm. Lisa Wilson: Correct. Correct. Jordan Grumet: There are some certainties, and yes, occasionally there are people who are put on hospice, or occasionally there are people who said, the cancer's everywhere, you're gonna die, and they don't. But those are very few and far between. I mean, the uncertainty is much less than family members tend to think. but they cling to that uncertainty because it feels makes them feel like they're doing something. Lisa Smith: that they have some kind of control, right? Like that when things are spiraling out of control, you feel like maybe that's something that you can control. can... Yeah, I know. Lisa Wilson: Right. Jordan Grumet: Yeah. Right. Which is so funny because it's it's actually the opposite. It's control and Lisa Wilson: It is Jordan Grumet: agency is saying, This is where I am, now what? And that's exactly what hospice tries to do. It's like we don't deny where you are, we tell you exactly where you are. But then the important question is, now what? Like now what would you like? What looks like dignity to you? What looks like comfort to you? What experiences? If you've got a week left, what is the most important experience? Is it that your grandson comes and visits you? Is it boy if you're hungry, is it that you have that last ice cream Sunday? Unfortunately most people aren't hungry, but occasionally you get people are hungry at the end of life. Is it that you die in your own bed? Like what what is what's what's important to you? Because that we might have a little agency over. I have no control over this cancer that's invading your body that's eventually gonna cause your heart to stop. but maybe, maybe I can give you that special moment or have you in that special place, or have you die surrounded by your family, which happens very often. Lisa Wilson: Yeah. Yeah. Lisa Smith: Well, Jordan Grumet: Like maybe we can do those things. Lisa Smith: it really comes back to just having these conversations and taking the stigma away from these really hard, tough conversations that we're finding ourselves in. Lisa Wilson: you gotta have a sense of humor as well. Like my mom was in hospice and I was we were talking about her end of life plans and I was like, Mom, what do you want where do you want us to spread your ashes? And she named this body of water that, you know, we grew up on. And I was like, But mom, you can't swim. And she was like, you're right. And then I'm like, Ha, I gotcha. Right. Like you gotta like you've gotta treat them like the person you've always treated them as, but you know, in their last stage of life, like it's not always about you. Jordan Grumet: Ha ha ha. Yeah. Yeah. Lisa Wilson: You know, sometimes it's about that person. so Jordan, Like let's talk about the high five. So you have talked about the many lessons you've learned from your hospice patients. What is the one thing that you will say impacted your life in the most positive way that came out of being a hospice care doctor? Jordan Grumet: Yeah. Well, I'll tell you, you know, one of the biggest gifts for me is I don't really fear death anymore. Like I've seen it and I've seen how peaceful it can be, and I've seen how families come together. And so like any fear or anxiety I had about kind of like dying in the dying process is gone. And that was a huge gift to me because I think most people walk around petrified of this moment that they know is coming. Like you're not gonna escape it, you're gonna die one day. And most people are petrified of this idea. And so I've Lisa Smith: Mmm. Lisa Wilson: Mm-hmm. Right. Lisa Smith: Yep. Jordan Grumet: People have given me the gift of allowing me to be present through their illness processes and at their deaths. And what you see is again, death is often quiet. Suffering usually is somewhat minimized with the right medicines and family members close. And that's that's it. It's like a slipping away. People just slowly slip away and then they do. And if you've sat vigil at a family member's bed, you know exactly what I'm talking about. Sometimes it's days, sometimes it's even weeks, and you're there and you're there, and you're like, when's this gonna happen? And they're not talking anymore, and they're starting to breathe heavy, and then all of a sudden they just slip away. Lisa Wilson: Mm. Lisa Smith: Hmm. It's beautiful though. That's a good takeaway. Mm hmm. Mm hmm. Yeah. Lisa Wilson: It is. What a gift. I'm like what an absolute gift. So for the call to action or our homework, Jordan, if everybody leaves this podcast with one thing that they need to do to get ready, to better understand hospice or to get ready, what is that one thing they need to do? Jordan Grumet: I think that what you really need to do is if you can to start talking about it. Because that's really where it is. When you talk and you build these conversations and you build this trust, you're creating an external structure to house all that pain and fear and anxiety. And that's where you want it to be, out in the world with your loved ones together, so that it grows and then eventually dissipates. When you don't talk and you deny and you cling to false uncertainty, you're burying all that pain and hurt and suffering and guilt inside of you, and it destroys you. It means that you're gonna be having the most traumatic events, like when the death is gonna be traumatic and the guilt is gonna last. And so we really have to focus on being able to talk about these things. When you talk about your advanced directives, you're pre-mourning. When you're discussing with your loved ones what kind of things they might or might not want at the end of life, you're giving them agency at a moment that feels like everything's out of control. And then when you listen to them and carry out their wishes and make the best, most dignified death they can have, and you give them something to be excited about on most days until you allow them to feel alive until Lisa Wilson: Mm. Jordan Grumet: The day they died, that's a huge gift. That's what we give each other as humans. But you've got to be willing to like have those conversations and be open about it. And I know it's uncomfortable, but being someone who's been around it enough to know that's how we do this, and it doesn't destroy us. Right? How do we love and not be destroyed by it? Because if you love, you will lose. Everyone will, we all will. Lisa Wilson: Yeah. Jordan Grumet: And so how do you love and not be destroyed by it? You talk about it. You you you pre mourn and then you give people dignity and then you mourn afterwards. Lisa Wilson: What great advice. So don't be afraid to Lisa Smith: said. Lisa Wilson: have the conversations. No one's gonna give you a manual. No one's gonna show up tomorrow and tell you exactly what you need to say to those loved ones that might be going through this. But you can prepare for it so that it's not so apocalyptic when it does happen. And the first time you hear that word, you're gonna know what to do. Which I mean, could you do anything better for your future self? Lisa Smith: Mm-hmm. Mm-hmm. Mm-hmm. Mm-hmm. Lisa Wilson: Than to have those conversations now, so that you're all kind of working from the same sheet of paper and the same sheet of music. And Jordan, it's always such a pleasure talking to you. You're Help I Needed Adult series one and two guest hosts. I always feel like I walk away a smarter person, more prepared. it's just it's amazing. So thank you so much for being here and and having this conversation. Lisa Smith: true. Yes. Absolutely. Mm-hmm. Lisa Wilson: And if you're out there right now still feeling like you're not ready to listen to all of these because we're talking about a lot of hard stuff, we see you. These are for you. Just take it a bite at a time. Remember, you guys to hydrate, unclench jaw, roll your shoulders back and go high five somebody. Bye, you guys. Thanks so much. Have a great week. Lisa Smith: Bye.