Everyone Deserves A Good Death

The concept of hospice was created as a way to help people with only a few weeks to live spend their last days comfortable an surrounded by friends and family in the hope they can pass away peacefully. It’s kind of crazy hospice was ever a radical idea. See omnystudio.com/listener https://omnystudio.com/listener for privacy information.

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00Speaker 00

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• 0:04Josh Clark?

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• 1:38Speaker 00

  Welcome to Stuff You Should Know, a production of iHeart Radio.

• 1:47Josh Clark?

  Hey, and welcome to the podcast. I'm Josh and there's Chuck and Jerry's here too. So this is an old fashioned, rootin', tootin' episode of Stuff You Should Know. And about something we need to talk about Chuck, okay?

• 2:00Speaker 02

  Okay.

• 2:02Josh Clark?

  Do you remember back in like the like about like the 2009, 10, 11 era? When like death was all the rage? People were having like death cafes and like creating living wills. And it was just a big thing that everybody talked about.

• 2:18Speaker 02

  When was this?

• 2:19Josh Clark?

  Like 2009 to 2000, maybe 11.

• 2:22Speaker 02

  I don't remember that, but I'll take your word for it.

• 2:25Josh Clark?

  It was a real thing for sure. Unless I've just completely lost my marbles and I just made up a whole era of American culture. I don't think I did, but that has died itself. Like it's gone back to death has gone back to being a bit of a taboo topic. An uncomfortable topic, at least, at least here in the United States.

• 2:47Speaker 02

  I didn't know that either.

• 2:49Josh Clark?

  It's, it's true. I guess I'm just speaking from my, for myself anecdotally.

• 2:53Speaker 02

  Oh, okay. That makes a lot more sense.

• 2:56Josh Clark?

  So, um, okay, well, let's just cut to the chase here. There's this concept of a good death.

• 3:03Speaker 02

  Yeah.

• 3:03Josh Clark?

  Right? And you can probably fill in a lot of the blanks of what that means and what it means to you at least. But there's actually like some components to it that studies have found like kind of bubble up to the top that most people can agree this makes a good death. There are things like getting to say goodbye to friends and family, having those people at your side if you want. So a certain amount of control over the dying process is, is something. Being pain free, not suffering.

• 3:32Speaker 02

  Sure.

• 3:33Josh Clark?

  Being in an environment and having a chance to like, kind of come to terms with the fact you're about to expire. Those are some of the top things that people say like, this to me is a good death. And not coincidentally, those are the kind of things that hospices, which we're about to talk about today, are intended to provide. That's the service they provide is to give you the individual a good death. And it's not something that's relegated to the rich. It's not something that's relegated to the, um, the, uh, the educated. It's for everybody. Everybody deserves to have a good death. And that's pretty much the, um, the, the motto of hospice. And in fact, I ran across one motto. It said, if you can't add more days to life, add more life to days.

• 4:20Speaker 02

  That's, that's great. It sounds a little too corporate slogany, but I like the sentiment.

• 4:25Josh Clark?

  Yeah, there's a mascot, Louis the Dead Guy.

• 4:28Speaker 02

  Right.

• 4:29Josh Clark?

  Who, uh, who's like always saying that slogan. And he did a partnership with Home Depot for some reason recently.

• 4:36Speaker 02

  Oh, boy. Well, that explains the orange bed sheets and things.

• 4:39Josh Clark?

  Right.

• 4:40Speaker 02

  Uh, all right. So that's probably the last semi joke we're gonna make. You'll have to forgive us for that. We did a whole episode on dying and, um, I don't even know if we made one joke in that one, so.

• 4:50Josh Clark?

  Sure, we did.

• 4:51Speaker 02

  You think?

• 4:52Josh Clark?

  Yes, I absolutely think.

• 4:54Speaker 02

  All right. Well, we'll pair that with this one, uh, and, and, cause we got a lot of great feedback on the dying episode and how that could kind of help people out. So.

• 5:01Josh Clark?

  Yeah.

• 5:01Speaker 02

  Uh, maybe this will do the same. Uh, we should probably go back in time a bit and explain the history of hospice because it is very recent. If you look at sort of the timeline of people in the world dying,

• 5:14Speaker 02

  um, hospice has only been around since like the sixties or seventies and, and the form that we know it. Uh, because previous to that, uh, for all of time, basically, medicine was like, hey, we're here to cure people. And if, if it, it turns out that we cannot cure you and that the end is near, um, for a very, very long time until the last like, you know, like I said, since the sixties or seventies, very shamefully, um, hospitals and even doctors would sort of like, uh, it was a reminder that they, they couldn't save you. So they didn't spend a lot of time with you and

• 5:51Speaker 02

  there are a lot of, you know, well-known reports of, um, people kind of like scurrying past rooms where people were in their final days in a hospital and stuff like that.

• 6:00Josh Clark?

  Yeah, they left the dying who, who were incurable now to basically die alone. They, they withdrew support. That was just what they did. And like you said, it was a reminder of the failing of medicine. And this was a time when modern medicine was not in any kind of mood to be reminded of failings because, I mean, the 20th century was pretty triumphant for it. I mean, I saw the, um, the infant mortality rate decline by 90% over the century. There's like sanitation, clean drinking water, polio vaccine, like science could do anything. And people who were incurable were just a reminder that there were limits to that whole thing.

• 6:36Speaker 02

  That's right. And another thing that was going on, and this is also pretty shameful. Well, I guess not shameful, but they've since revisited how they look at pain management.

• 6:47Josh Clark?

  Yeah.

• 6:48Speaker 02

  You had to like really be in pain to get pain management. And then that had to like wear off and you had to be really in pain again for them to administer more pain management. They were worried about opioid addiction and stuff like that. But you know, these days it's definitely more like, hey, you know, we're not worried about you getting addicted to opioids in the final possibly days of your life. We just want to make you feel okay.

• 7:16Josh Clark?

  Yeah, that's definitely the hospice philosophy is you don't have to wait until one painkiller wears off to get another dose. You can, you know, stay comfortable. That's the point is to make the person comfortable. That's called palliative care. We'll talk a little more about that. But it's essentially just taking care of symptoms to keep people comfortable.

• 7:35Speaker 02

  Yeah, for sure. Nuns were kind of on the scene early on, providing, you know, emotional support. They couldn't dose out pain medication, of course, and stuff like that. But they, you know, it was a lot of times it was religious organizations that were stepping forward that were kind of doing the hospice type work that would come along in the 60s and 70s. Thanks in part to a couple of big landmark books that came out.

• 7:59Josh Clark?

  Yeah, there was this whole thing in the 60s and 70s that was kind of this rebellious streak that went across like or against some of the just unquestioned institutions. And one of those was medicine and doctors and hospitals. But there was a psychiatrist named Elizabeth Kubler Ross, who very famously came up with the five stages of grief. That was in her 1969 book on death and dying. And in addition to being famous for coming up with the five stages of grief, she also basically interviewed people in the Chicago hospitals ICU.

• 8:32Josh Clark?

  Who were dying and just found that they were just being totally neglected. And so she definitely lobbied for dying and dying people and their families to be listened to and to be treated rather than just ignored.

• 8:46Speaker 02

  Yeah, we talked about her and that book in our dying episode. I don't think we talked about the denial of death from 1973, but that was from an anthropologist named Ernest Becker. And he was writing this as he was dying himself. So he was in a position to really give a good, you know, pretty moving first person account. And he talked about sort of, you know, a good death and accepting the inevitability and stuff like that. So these things were sort of happening in the cultural movement when a woman, a hero, I think, named Cicely Saunders came along, eventually the founder and medical director of St. Christopher's Hospice in London. And she really changed the game and kind of birthed the whole sort of modern hospice movement.

• 9:32Josh Clark?

  Yeah, she had a bad back from a young age and apparently it kept her from her desired career of nursing. So she instead became basically a social worker, what at the time they called a lady almaner or distributor of alms, right? So it's pretty old timey, but it does kind of, it's a nod back to the original hospice, which were founded in the Crusades by the Roman Catholic Church. Ironically, Cicely Saunders was raised an atheist, but she had a conversion to Christianity, evangelical Christianity, even when she went on vacation with a Christian friend and her family. And one of the other big experiences that led her to found the hospice movement essentially

• 10:17Josh Clark?

  was she had like some friendships with some people that she helped essentially as they were dying and really kind of was moved by these friendships and wanted to make sure that other people had that same experience. So she did something that, I mean, just kind of, I think, really gets across the kind of person she was. And she went to medical schools to make her voice a little more credible.

• 10:41Speaker 02

  Yeah, she started medical school at age thirty-three. This is in the nineteen fifty's and she finished medical school. She was able to work as a physician. She started writing articles and stuff about this, about people, you know, being deserted or feeling like they'd been deserted by their doctors, like the closer they got to death, like we were talking about. And said, hey, there's gotta be a better way to take care of people, not only physically, but emotionally and spiritually as they near death. So she, you know, got that medical degree, got a research job at a hospital, started studying, you know, she wanted to have a legitimate sort of background for this so

• 11:23Speaker 02

  people didn't think she was just some, some wacky empath trying to do good, which, you know, should be enough. But she figured she was armed with medical training and real data and on like pain management and stuff that she would go a lot further and she did.

• 11:38Josh Clark?

  Yeah, she went and studied pain management firsthand so she could come up with her own protocols. One of those protocols that was really groundbreaking and went against the norm was to give dying patients not just heavy doses of morphine to make sure that they weren't in pain, but also cocaine to keep them from just being kind of doped up for the rest of their lives. She would find out what liquor they preferred and would make sure that they had their liquor. And all of this sounds like just completely reckless and careless, but she had before and after pictures of these people, terminal cancer patients who in the before pictures, before they had been treated with her new protocol of pain management and I guess mood

• 12:22Josh Clark?

  management too, if you think about it. They did not look very good. They looked like terminal cancer patients and afterward they were sitting up in bed, perked up, some had taken up hobbies like knitting. And she would show these before and after pictures when she went around the world speaking on behalf of hospice that she was trying to found it. And like she would get converts at every, every talk she gave just from the, the before and after pictures alone.

• 12:48Speaker 02

  Yeah, it was, it was pretty remarkable. Uh, this all culminated in 1967 when she founded uh, St. Christopher's Hospice, like I, like I mentioned earlier in London. Uh, and kind of right off the bat, she said, all right, we have a new way to deal with pain management. Uh, we're going to get rid of visiting hours and people, family can come and go and it's convenient for them. Uh, and we're going to not talk about just, you know, physical pain. We're going to talk about what I call total pain, or what she called that. Um, you know, like we mentioned, emotional support, um, social support, spiritual suffering that happens with people. Uh, and one of the people that she worked a lot with was a, a nurse in the U S named Florence Wald, who ended up doing the same thing in the U S. She said, I think

• 13:32Speaker 02

  we need this over here. Uh, she started up the very first hospice in Branford, Connecticut in the United States. And that was six years later after the one in London in 1973.

• 13:43Josh Clark?

  Yeah, that first American hospice, they tried a few names out before they settled on the, the final one, Hospice R Us, McDying. And then they just kind of went with the straight name.

• 13:55Speaker 02

  Wow. All right.

• 13:56Josh Clark?

  So, um, yeah, so hospice, that spread pretty quickly. I think you said St. Christopher's opened up in 1967. Um, and, uh, the one in Branford opened up in 1973. That's pretty good traction to, to create a brand new idea in both the UK and the U S and start spreading it around the world. And one of the things I think you said about St. Christopher's was even though it was religious or at least spiritual, it was nondenominational. And that is a huge point about hospice that is lost on a lot of people. I think a lot of people associate it with religious groups still. And like if you're not say, Christian, you wouldn't really want to go to a Christian hospice.

• 14:40Josh Clark?

  That is not at all the way that hospices work. And in fact, there's plenty of people who are atheists, they're humanists. And they just are like those empathic do-gooders that you were speaking about earlier. And none of these philosophies clash because they all come together to essentially say, one of the big parts of dying is some sort of spirituality, or at least some sort of peace that we associate with spirituality. It doesn't matter how you get there. We're all just kind of coming together to make sure that everybody can experience that. It's a big misunderstanding of hospice sometimes.

• 15:17Speaker 02

  Yeah, for sure. In the US, it's usually, or at least at first, it was done at home. That was the difference from the early ones in the UK. They were inpatient facilities. But in the US, you know, it was sort of a budget issue at first because they couldn't get these facilities and pay for them. But I think they also realized that people wanted to die at home. And there was also this sort of long-running institutional distrust that Americans had. And it was a lot of volunteer work at first, like almost entirely volunteer early on. It was sometime, like we mentioned, people in the clergy, still doing this kind of work after centuries of doing so. Doctors that were moonlighting that wanted to help out.

• 15:59Speaker 02

  And a movement was, was, you know, clearly growing. And it made government sit up and take notice when they realized that it was saving money on healthcare, because not only was the movement growing and people were just feeling better about it, but it was keeping people out of the hospital, sort of off and on, off and on, off and on. And so much though, that the US government and the Reagan administration said, you know what? We should, we should get this covered. And in 1982, the hospice Medicare benefit went through, which allowed people all of a sudden to be able to pay from a, you know, staff run by professionals that were also paid and, you know, get it covered through Medicare.

• 16:43Josh Clark?

  Yeah, which opened up the door for people who wanted to help people during the final days or weeks of their life, but there wasn't a career associated with it. Now there was. So you could, you could pursue that kind of medicine, end of life medicine. That's pretty cool that that was a huge change. I suspect that the saving money had a lot to do with it, though.

• 17:06Speaker 02

  Yeah, that's usually the case.

• 17:08Josh Clark?

  And the reason why, let's just spell it out explicitly. The reason why it saves money is because you're taking a patient off of a very expensive track, which is a lot of different medical procedures and treatments and saying, we're like, you're not going to go for the curative treatment route anymore. We're going to take you out of this crazy nutso medical world and put you in a much more peaceful, tranquil world where you can end your days as a happier person rather than feeling like a guinea pig being experimented on. And it's just much cheaper to do that, too, as you can imagine.

• 17:43Speaker 02

  Uh, feels like a good breakpoint. Yay.

• 17:46Josh Clark?

  Yay.

• 17:46Speaker 02

  All right. We'll come back and we'll talk about how the, the modern system works right after this.

• 18:06Josh Clark?

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• 21:17Josh Clark?

  So here in the United States, Chuck, hospice is usually paid for by Medicare, which is federal insurance coverage for people who are retirees typically, or maybe disabled. And then also sometimes Medicaid, which covers lower-income Americans. And the upshot of all this is that if you are dying and choose to go on hospice care, you are not charged for this. And that is a wonderful thing that the federal government does. Apparently, the UK is very much like that, but a lot of it is donation-driven rather than paid for by the government, which does chip in, but the lion's share is paid for by donations in the UK. But there's eligibility requirements that basically say like,

• 22:01Josh Clark?

  if you don't check these boxes, or if you stop checking these boxes at any point, you can't be in hospice anymore.

• 22:08Speaker 02

  Yeah, and those boxes specifically, you have to have two doctors certify that you have, and this is for Medicare, you know, to get it covered, not just to get into hospice.

• 22:18Josh Clark?

  Right.

• 22:19Speaker 02

  You have to have a terminal illness, you have to have six months or less to live, and you cannot be going after curative treatments. And we'll talk about some, I don't even know if there are exceptions, but some things that some people might think are curative treatments and aren't curative treatments. That doesn't mean like, don't ask for anything at all.

• 22:40Josh Clark?

  No, you can't have a Band-Aid.

• 22:42Speaker 02

  Yeah, you're on your own. So we'll get into those. But, and this is going to be a sticking point that kind of comes up later in some of the failings of the current system. But Medicare pays hospice companies and agencies a daily rate instead of for specific services they provide, like basically all the other medical treatments you're ever going to get. And there are four levels of that care, and they're going to be different rates depending on the level that you're going to get, and also where you are.

• 23:16Josh Clark?

  Right, so if you're running a hospice, you would get a flat fee paid by the government for a patient who's in routine home care, which is you're not in crisis, you're still dying, but you're doing okay. And it usually is just a visit, maybe a couple of times a week. They're coming by to make sure that their meds are going down right. They maybe have like their nutrition going. They're just essentially just checking on you. That's routine home care. There's also continuous home care where if that patient slips into a crisis, like maybe they start vomiting uncontrollably, they start suffering uncontrollable pain, that their meds aren't doing anything for anymore, changes in consciousness.

• 23:58Josh Clark?

  All of a sudden now they have 24/7 hospice access at home.

• 24:05Speaker 02

  Yeah, there's also, there's a couple more. There's inpatient respite care. That's when a patient goes into like a, you know, they have to leave home to go into a physical hospice center for up to five days. A lot of times this is to give their caregiver time off because that's one of the the brutal parts about end of life is, and I say burden on the family, not like what a hassle, but you know, it is a burden on the family.

• 24:30Josh Clark?

  Yeah.

• 24:31Speaker 02

  People have to, besides the emotional devastation they're going through, a lot of times have to rearrange their jobs and like even leave jobs sometime to do this kind of thing full time. So it can be quite a heavy burden on a family.

• 24:45Josh Clark?

  Yeah, actually Chuck, that that's a, if you look up downsides of hospice, that's pretty much the number one issue with it is that it, it transfers responsibility for caring for the dying patient from say like a hospital to their family. And that's a, that's, it is, it's a very big deal.

• 25:04Speaker 02

  Yeah, and then the last one is general inpatient care. And that is when you're addressing pain control or any kind of symptom management that you can't, that you have to like go in and take care of at a specific place. It's not the kind of thing you can do at home generally. And then, you know, palliative care is a big part of it. That's what we kind of mentioned earlier is, is just making people feel better toward the end. You know, I mentioned things that don't count as curative treatment. Like if you're, if you have heart, like active heart failure, they can try and reverse that. Or if you have some like nasty bed sore that gets an infection, that's not, that's not going to boot you off covered hospice care to get that taken care of.

• 25:48Josh Clark?

  No, the key to being covered for hospice under Medicare is that you are not pursuing treatment to cure the thing that's got you permanently ill.

• 25:59Speaker 02

  Yeah.

• 25:59Josh Clark?

  Right? So like you said, if you have to develop a heart condition, but that's not what's killing you, you have terminal cancer, they can, you know, treat your heart condition. And even if you do have terminal cancer, if you have nausea from cancer, pain from cancer, they're going to treat that because they're not trying to cure the cancer. You have to give up things like radiation or chemotherapy. Those are curative treatments, but there's the idea that they're just like, nope, sorry, we're just going to put you in bed and basically let you lay there. That's not at all what, what you have to give up in order to enter hospice.

• 26:33Speaker 02

  Yeah. And, you know, the hospice workers are doing a lot of stuff for you that goes above and beyond just making you feel better or maybe sitting with you and like, you know, brushing your hair, like there's all that stuff that they're doing, bathing you, housekeeping sometimes, you know, helping out with gathering and administering the medications. But, you know, they're doing all kinds of stuff. They might be shopping for you. They might be babysitting for your family to give, you know, the, like we mentioned, the people in your family that are caring for you, like to give them a break. They may help with fundraising. If you have like, you know, money you need raised for your treatment, they may be bring

• 27:16Speaker 02

  in music and comedy performances to hospice centers. People that cut hair, like volunteers that'll come in and style somebody's hair even. I remember they, that was a big deal for Emily's grandmother near the end is, you know, that she wanted her hair done and to look like she looked. And that stuff goes a long way to just putting people at ease, you know?

• 27:38Josh Clark?

  Oh, for sure. Another one that volunteers can do is take care of the person's pet to make sure that if the person is opting for in-home hospice, that their pet doesn't have to go live with somebody else because they can't care for it anymore. So you can go and feed somebody's pet, take them for a walk, change the litter box. And then something as simple as just sitting with somebody and watching TV with them is enough. And like, this is just a volunteering opportunity in the United States and the UK. Basically, anywhere there's hospice, they would very much like you to volunteer to just basically be there. And just being a human being who can drive a car over to somebody's house is essentially the qualifications. That's, that's basically all you need to do. And they'll tell you

• 28:22Josh Clark?

  what to do from there. But no one would expect you to like, you know, inject the person. As a matter of fact, you'd probably get in big trouble if you did inject the person with anything. You just need to be there. And in addition to just being there for the person, the patient, like you said, that gives the caregiver some time to just go take a shower, do something, just stop being a caregiver for a couple of hours, too.

• 28:45Speaker 02

  Yeah. And, you know, even though a lot of them are professionals, like most of them now, there's still quite a lot of volunteers that do this kind of thing. That Medicare law that I talked about in 1982, that stipulated that hospice facilities have at least 5% of the patient hours provided for by volunteers. So that's one of the reasons. And also just because there are people in the world, you know, some people have maybe gone through this with a family member and then they want to give back. Some people are just wired this way as empaths to want to help people. And then sometimes it's people that are preparing for a career in healthcare. And, you know, getting in a hospice and kind of going through

• 29:27Speaker 02

  the worst of the worst situations is, I imagine, pretty good preparation on dealing with any kind of patient.

• 29:34Josh Clark?

  Yeah, and you would prepare for a career in that because hospices, like you said, they are professionally staffed and not just with nurses, not just with hospice doctors, but social workers, bereavement counselors, some of those clergy and just general aides who can come together and help with that, that thing that Cicely Saunders started kind of seeing clearly, the total pain, where, you know, if you have psychological pain, it's going to make your physical pain exacerbated and vice versa. And the worse off you are, the more hesitant people might be to come visit you because they feel hopeless or they're just freaked out or something like that. So now you have social pain. So if you have

• 30:15Josh Clark?

  all these people coming together to treat the person's total pain, you have a much calmer, happier, again, good death. And those are called in the hospice industry's interdisciplinary groups. And they, they do, they form a team for each patient to figure out what to do for each of the patients to, to help them basically find peace and comfort and calm.

• 30:37Speaker 02

  Yeah. And this is a, you know, it's a booming industry now in the United States. And we'll sort of get to the, the downsides of that in a little bit. But statistically, from 2,000 hospice centers in 2001 to about 5,700 today, 20, you know, 24, 25 years later, it's really grown a lot. Utilization grew by 32% between 2013 and 2022. There was a 25% increase in Medicare beneficiaries, obviously is the boomer generation is aging. But that doesn't account for all of it, you know, 25 compared to 32%. About half of people

• 31:22Speaker 02

  now in the United States enroll in a hospice before their death. If you have cancer, you're far more likely to, to do so, as well as being female and more educated and also older, which at first seemed like a, like a, well, of course, but. Just so far as to say, if you're someone very tragically in your younger life that is stricken with something like this, you're far less likely to enroll in hospice.

• 31:47Josh Clark?

  Yeah, and there's actually a lot of reasons why people don't enroll in hospice. A good majority of them just don't either aren't really aware of it or don't understand it. And there's stigmas about hospice, too. Like, there's a whole idea that if you go into hospice, you're giving up on fighting for your life, you're giving up on living. And that's just absolutely not true. Like, if you have a terminal illness and it's really no longer treatable, a good doctor will say, like, there's nothing more we can do for you. There's plenty of stuff we can do for you, but none of it is going to extend your life. It's going to make your last days pretty miserable. We recommend that you go into hospice and have, like, good last days. Hang out with your friends and family, like, be peaceful.

• 32:30Josh Clark?

  That's actually, as far as the American Society of Clinical Oncology is concerned, that's a sign that you've had good cancer care, that toward the end, in the last, you know, few weeks, your cancer team says you've reached the, you know, incurable stage. There's nothing we can do for you anymore, except let's put you into hospice. The problem is, is there are plenty of doctors out there who do see that as quitting, do see that as giving up, and are known to steer people into hospice too late, to where essentially, they just spend like the last couple or few days in hospice, and they don't have a chance to actually develop what, again, is referred to as a good death.

• 33:12Speaker 02

  Yeah, and they've, there's even evidence that going, like, trying to cure yourself and sort of ceasing that process and starting up with hospice can actually make people live longer. A lot of reasons, maybe you're being monitored a little more closely, maybe your symptoms are being managed a little, little better. And just everything that goes into the non-physical, you know, sick and dying part that we've been talking about, the emotional part and everything else, like, if all of that is eased, studies show that you can, you can make it a little bit longer.

• 33:47Josh Clark?

  Yeah, that actually happened to Yumi's dad. He was in hospice and given not

• 33:52Speaker 02

  Man, I remember.

• 33:52Josh Clark?

  Not very, yeah. There was just a, just a pretty raw time. He was given not much time to live at all. I think like days. And he didn't, didn't pass. And Yumi started to notice he was actually kind of, he was eating more. He was, his mood was starting to improve. And she convinced the hospice doctor that he was not dying anymore. And one of the things that became really clear that being in hospice at home can do to improve your health is that you're getting better nutrition, you're getting good sleep, you're surrounded by people who don't have to come see you in the hospital setting during visiting hours. And all of those things are terribly managed in the hospital. So at home, you can just get better

• 34:35Josh Clark?

  and better. And Yumi's dad eventually left hospice, was discharged alive, and went on to live for another three years.

• 34:45Speaker 02

  Man, I remember all that going down. And Jerry and I, all of us being like, oh, man, this is like, this seems like it's it. And you were bringing reports, you were like, man, the darndest thing.

• 34:58Josh Clark?

  Yeah.

• 34:59Speaker 02

  And then I just, I think we all suspected it was just gonna happen again right after that. And it was, yeah, it was a few years. It was just, what a, what a story.

• 35:06Josh Clark?

  Yeah, I'm, I'm, I've never been more proud of anybody than I am of Yumi. She was the only one who saw, like, she saw it. And she had to convince everybody else, including me, that no, he's, he's not dying. And she brought him back for sure. So, yeah.

• 35:21Speaker 02

  What a gift.

• 35:21Josh Clark?

  It really was a gift. I'm, yeah, I'm very proud of her.

• 35:25Speaker 02

  Uh, all right. Shall we take another break?

• 35:28Josh Clark?

  I think we should, man.

• 35:29Speaker 02

  All right, we'll be right back and we're gonna finish up with hospice right after this.

• 35:48Josh Clark?

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• 38:51Speaker 02

  One thing we should mention briefly, we don't have to get too much into it, but hospice and right to die and assisted dying, these are two things that don't go together, but they obviously do go together in a lot of ways because you've got a group of people that are... it's the same group of people, mainly. It's even, I think legally designated in places where you do have the right to die. You have to have doctors sign off that you're within six months and there is no cure. And it is in lockstep with hospice, but it's not the same thing because it's just not. The World Health Organization very much defines palliative care

• 39:36Speaker 02

  as something that neither hastens nor postpones death. It is not the point of hospice to go in and find an empath who will help assist you along a little quicker. If you live in one of those states, I think it's an amazing gift to be able to do that. And there's a track for doing that, but it's not hospice.

• 39:58Josh Clark?

  No, and the reason why it riles up hospice people who are against that is because there are, one of the reasons that people do choose medically assisted dying is to end their suffering. And hospice people are like, no, we know how to end their suffering without them having to die.

• 40:15Speaker 02

  Yeah.

• 40:16Josh Clark?

  And that's why it really gets under their skin. Although that said, there are plenty of hospice people, probably humanists who are like, it's anybody's inalienable right to choose how or when they die.

• 40:28Speaker 02

  Yeah.

• 40:29Josh Clark?

  So yeah, it is kind of a tricky thing, but it isn't, I think it is generally unfairly associated with hospice. And even palliative care, I don't think we said explicitly, that is to treat and manage symptoms, pain, nausea, that kind of stuff, symptoms that come along with terminal illnesses. And that is a part of hospice, but not all palliative care is hospice. You can get that same stuff as you're pursuing like curative treatments, right?

• 40:53Speaker 02

  Yeah.

• 40:54Josh Clark?

  It's not like they're going to be like, you're getting curative treatments for cancer. Sorry, we can't do anything about the nausea then. It makes it, it has a place in both of them. And it has nothing to do with assisting someone and dying. It has to do with helping them die comfortably when they die naturally.

• 41:09Speaker 02

  Yeah. And you know, you're not going to get, you'll get morphine and you'll get like the good stuff these days, morphine plus, but you're not going to get the cocaine and the liquor.

• 41:19Josh Clark?

  No, I mean, unless you have a family member who knows somebody.

• 41:23Speaker 02

  Yeah, I mean, there's somebody's got a guy, maybe.

• 41:26Josh Clark?

  Yeah.

• 41:26Speaker 02

  Uh, or if you just have like a, you know, pretty empathic, like really empathic, like on the down low hospice worker.

• 41:35Josh Clark?

  Right. And I mean, even if you do score for them, they might not even want it. Like I tried to give Yumi's dad a bunch of cocaine and he's like, no, I'm good with, with the pain stuff I'm on now.

• 41:46Speaker 02

  Yeah. And then what to do with it, you know?

• 41:49Josh Clark?

  Uh.

• 41:52Speaker 02

  So we found another joke. Amazing.

• 41:54Josh Clark?

  So.

• 41:55Speaker 02

  Right, right before the dark side.

• 41:57Josh Clark?

  Yeah, because there is a dark side to this. And again, the one downside to hospices, it puts it's just the burden on the caregivers. We'll talk a little bit more about that in a second. But the the kind of generally agreed upon dark side of hospice is that there's such a thing as for profit hospices. And contrary to our private equity theme in our private equity episode, we should say that there are plenty of for profit hospitals, hospices that are perfectly well run. Yeah, the people who the family members who have patients and family dying there are totally happy, give them great reviews. Being for profit as a hospice isn't necessarily a bad thing. Where you they start to get lower marks than other

• 42:39Josh Clark?

  kinds of hospices, specifically nonprofit hospices, is when they are part of a publicly owned corporation. Yeah, hospice went with the IPO at some point.

• 42:50Speaker 02

  Yeah, like a chain.

• 42:51Josh Clark?

  Exactly. Or surprisingly, or not, private equity owns the hospice. And the reason why it's problematic is because the way that payment is structured has a built in incentive for for profit hospices to cut corners and cut costs.

• 43:08Speaker 02

  Yeah, there was a survey in 2024 that 25% of hospices in the US are owned by private equity firms now. So you can refer to that episode as to exactly what goes into that. But, you know, I said earlier, to put a pin in the payment structure, which is they don't get paid through Medicare. They don't get paid out per treatment given or for specific treatments given. It's just this flat fee. And obviously, if you have a chain, a hospice chain, that is for profit, and has gone through the IPO process and has shareholders to answer to, very sadly, many times, you're going to get hospice centers that that get that

• 43:53Speaker 02

  flat rate, but they're cutting staff and people are getting the bare minimum treatment required by law.

• 43:59Josh Clark?

  Right. And I saw there's a, there's a thing where it's supposedly federal regulations say that you have to visit an in-home hospice patient no less than twice a month.

• 44:11Speaker 02

  Yeah, just twice a month?

• 44:13Josh Clark?

  Right. And then a lot of for-profit hospices, like just basically do that minimum. And if you, most people agree, if you are in some sort of crisis, you're getting more visits. But if you're not in a crisis, you're getting fewer visits because they need to balance that out to cut costs, right? Or to keep costs down. It turns out that's a myth. Federal government doesn't require two visits a month at minimum. The federal government doesn't have any requirements for how often or how little a hospice has to visit a patient at home.

• 44:46Speaker 02

  They have no requirements, or they're not enforcing anything?

• 44:48Josh Clark?

  They don't have any requirements. And that's another problem, too. They don't enforce a lot of the rules that there are. And there's already a lot of rules that have loopholes. So this is a system that is just set up for abuse. Luckily, most of the people who run hospice companies, they're not in it to abuse the system. They're in it to help people. But there, it's, there is a place for bad actors to milk the system, overcharge. Like, apparently, there's, it's extremely complex, but there are ways that you can charge more than the flat rate per day. And I guess a study from, I think, 2021, in

• 45:31Josh Clark?

  the Journal of Geriatric Care, I think, found that for-profit hospices tend to charge Medicare 34% more than nonprofit hospices. There's just a lot of stuff you can do to game the system.

• 45:46Speaker 02

  Yeah. And, you know, to be clear, hospice in general gets good marks from people. Even for-profit hospices generally get good marks from people. But they've drilled down and they found the ones that get the lowest ratings for care are the ones that are publicly traded corporations and owned, and/or owned by private equity firms. So,

• 46:12Josh Clark?

  Yeah.

• 46:13Speaker 02

  Do your research, you know, if you're getting into this, because there's, there are, like we said, there's 5,700 of them in the US. And hopefully, there is one near you that will take care of you a little bit better. To remain on hospice, there's also, you know, all kinds of rules as far as what's called live discharge.

• 46:30Josh Clark?

  Right.

• 46:31Speaker 02

  You have to demonstrate ongoing, steady decline at recertification intervals every 90 days for the first six months, then every 60 days after until death or discharge. And discharge is basically exactly what it sounds like. You're discharged, like you're discharged at a hospital. It may be because you want to try, you know, curative care again, which is, which is great. And you're right. It could be because of an emergency that you have to go to the hospital for, which will boot you off, which really stinks.

• 47:04Speaker 02

  But there are guidelines about discharge and not all of them seem fair.

• 47:08Josh Clark?

  Yeah, and you can imagine if you're dying of a terminal illness, being moved from a hospice to a hospital to continue treatment, maybe home, where you have a bunch of emergency room visits ahead of you because your symptoms are going to flare up. It's not a comfortable thing to be discharged from one place to another. It's also a huge burden on the family, too, because, again, the care is being transferred from medical professionals to the family. But also, the, the whole premise of it is just faulty because not all diseases follow the same trajectory in the decline of the person. And yet they're all held to the same standard, which is essentially the standard that cancer creates a decline in a patient, too.

• 47:52Josh Clark?

  So essentially just saying, if you have a terminal illness that's certified by doctors, that doctors recertify, say, every 60 days, you don't have to face a live discharge. Like, you can stay in hospice until you die. Your death doesn't have to cooperate with federal guidelines. That would be a huge change, and a really simple one, to, to hospice rules. But apparently that is not, that's not happening right now.

• 48:18Speaker 02

  Yeah, and even if, you know, you aren't moved home, let's say, let's say you move to a different facility, because there definitely is a problem with, like, you know, not having enough beds at different places and...

• 48:31Speaker 02

  The family gets, can get ideally into a routine at least. And you know, they kind of figure it out. And then with Emily's grandmother, it seemed like once we, everyone got into the routine and everything had kind of been figured out, then all of a sudden, some change would happen where Mary would have to go somewhere else. And then all of a sudden, it's new visiting hours, it's in a different place and everyone, and you know, that's just on the family, of course, just like you mentioned, the move for the patient is really burdensome. So there's still so much they can do, I think, to clean this whole system up, you know?

• 49:07Josh Clark?

  For sure. And even Chuck, if they're not inpatient, just at home, hospice basically overlays this support structure for you, the hospice patient in your home, right? So you have like medical equipment, you have medications that are like delivered to you at times. If you need a walker, you got a walker. Just all of this support, like you've got bereavement counselors dropping by, you have a social worker you're doing telehealth visits with. Well, like all it just stops. When you're discharged from hospice alive, they come and they take the medical equipment, they take your walker away, you stop getting your medications delivered to you. You might not even have those prescriptions any longer after that. If they were prescribed by the hospice doctor, it's a, it's a really

• 49:51Josh Clark?

  bad jam. And the other thing about it too, that Medicare is often taken to task for is they don't really pay enough for in-home hospice. Like that's the lowest pay rating, I guess, is in-home, non-crisis hospice care. And that means that if you are trying to stay at home, you either have to have a bunch of family members who are willing to commit their lives to taking care of you in your final days, or you have to have a bunch of money to pay somebody to do that same thing. And if you don't, and you want to die at home, you're SOL because you have nobody to take care of you at home because there's

• 50:33Josh Clark?

  not enough pay to pay people in hospice to come by and not enough volunteers to take care of you, take care of your needs on a regular basis.

• 50:43Speaker 02

  You know, Grandma Mary. Former foremost general in the stuff you should know Army.

• 50:50Josh Clark?

  Mm hmm.

• 50:50Speaker 02

  Had a T shirt that says, you can take my walker when you pry it from my cold dead hands.

• 50:54Josh Clark?

  That's all. I would love that dude. Oh my God, that would be such a great T shirt. We gotta get that one up there.

• 51:00Speaker 02

  Imagine taking a walker from somebody like to for that, that's your job. Like you're the person you're like, yeah, go over to go over to Grandma Mary's house and, and take her stuff.

• 51:10Josh Clark?

  I know it couldn't even be the person who also delivers it because it's such a mean job that there has to be one specialist who doesn't like anybody who just goes around to houses and takes the medical equipment back.

• 51:21Speaker 02

  Yeah, it's in, it's in Ronnie.

• 51:23Josh Clark?

  Uh, you got anything else?

• 51:26Speaker 02

  No, I have nothing else. Uh, hopefully this serves some people. Uh, and you know, just, just look around and, and do your homework and see if you can find a place that works for you and your family.

• 51:35Josh Clark?

  Yeah. And another good piece of advice is to do that, uh, sooner than later, like, um, to share your wishes with your family. Maybe even go so far as to create a, a living will or some sort of medical document saying like, I do want to go into hospice. I want to stop curative treatment at some point. Um, and then yeah, do like read reviews. It's like, just find out who you would go to if it starts to seem like that might be a possibility coming down the, the pike.

• 52:01Speaker 02

  Yeah. Oh man. My God, get a living will. I don't care how old you are. That's, it's very easy thing to do. And it's, uh, that and a will are the two biggest gifts you can give your family as you grow old.

• 52:13Josh Clark?

  That's right. You want to impress your parents and your seven, start thinking about a living will. Start talking about a living will to your parents and they will just be blown away.

• 52:22Speaker 02

  Totally. That seems like something in a, like a TV show about a precocious kid.

• 52:26Josh Clark?

  Yeah, for sure. Like, um, Alex P. Keaton, he would do that.

• 52:30Speaker 02

  Yeah, exactly. Oh, you know, he had one.

• 52:32Josh Clark?

  Um, so before we finish, I just also wanted to give a huge shout out to Yumi's dad's hospice doctor, Dr. Pujari.

• 52:39Speaker 02

  Awesome.

• 52:39Josh Clark?

  Who did not have any sort of ego and was totally willing to listen to Yumi and, and helped get, uh, her dad out of hospice too.

• 52:46Speaker 02

  I love it.

• 52:47Josh Clark?

  Shout out Dr. Pujari. And since I shouted out Dr. Pujari, as was foretold by the runes in 2008, I've just unlocked listener mail.

• 52:59Speaker 02

  This is Gen Z Stare Speaks Back. I have three emails I'm gonna try and sort of hit the highlights of because we got what I felt like was three really sort of legitimate answers as to what the Gen Z stare is all about that now I understand, you know? It may not be my jam, but like, it doesn't need to be my jam because I don't have to put my Gen X stuff onto Gen Z.

• 53:25Josh Clark?

  That's true.

• 53:26Speaker 02

  Hey guys, 22 years old, Gen Z, very much in the Gen Z stare era. I work in customer service, which is where I use it the most. But we were raised with, if you have nothing nice to say, don't say anything at all. So hence staring. So I guess they took that very much literally.

• 53:43Josh Clark?

  Yeah.

• 53:44Speaker 02

  It's not something just done to adults either. And this person points out that they do it for their friends. As far as the phone call, no one calls us. When they do, it's a spam call, which I was always told the double hello people. I didn't know that was a thing. When they answer the phone, it queues the robot. Did you know that?

• 54:01Josh Clark?

  Yes.

• 54:02Speaker 02

  Okay, I didn't know that. So I just answer and sit in silence until the awkward, is this Josie follows. And that is from Josie Boozer. This is another one. Hey guys, Gen Z person. I think the explanation you're probably looking for is a lot of Gen Z are using it are used to being interrupted, not taken seriously, or have our responses to stories be given a weird look. The example of where someone finishes a story and the person just stand there can either be, one, I don't have anything interesting to say about that story and I don't want to make something up. Two, I'm so used to having my opinions not taken seriously that I'm just not even gonna bother responding. Many of us are socially awkward and have trouble creating small talk with people that

• 54:46Speaker 02

  aren't close to us. Another reason may be because most of our conversations are online and have been online as we aged and many people give an emoji reaction to a long story or just get a smile and that's cool in response. That is from Sam.

• 55:05Josh Clark?

  Okay.

• 55:05Speaker 02

  So it's kind of tracking along the same lines.

• 55:07Josh Clark?

  Right.

• 55:08Speaker 02

  And then this is from Catherine, uh, who's been listening for five years as a 23 year old. I've heard people blame the pandemic, but I don't think it fully explains the generational trend since we all lived through the same period. I think there are two main causes. First, my generation has spent much more time in front of a screen than any previous generations did. We've grown used to one-sided content consumption. You would look crazy if you responded to a YouTube video the way you would a phone call or an in-person conversation. So we're a little out of practice with responding to prompts instead of just watching something. This all makes total sense.

• 55:40Josh Clark?

  It totally does.

• 55:41Speaker 02

  Uh, and then secondly, Gen Z seems to be more likely than previous generations to forego the fake politeness that used to be expected in conversations. I think this is partially because, uh, we're constantly inundated with advertisements. Uh, we've become highly sensitive to fake niceness because someone is trying to manipulate our emotions at every turn and sell us something. Uh, my generation seems much more likely to prefer genuine reactions, even if they're negative, because, uh, when we're online, it's the only way to know that something is not an ad.

• 56:12Josh Clark?

  Woo!

• 56:13Speaker 02

  Man, this is something else, huh?

• 56:15Josh Clark?

  Yeah, those are deep, from Josie, Sam and Catherine, right?

• 56:20Speaker 02

  Yeah, and I think they all sort of track along the same lines and that, that explains a lot. So, um, yeah, if a Gen Z person is just staring at you, maybe, maybe they think you're a real jerk and just don't want to say anything.

• 56:34Josh Clark?

  Right. They assume you're manipulating them right then.

• 56:37Speaker 02

  Yeah, or, or the other reasons mentioned. I think they're all valid in their own generational way.

• 56:41Josh Clark?

  I feel like that really explains the discomfort that people like, say, from Gen X get when we're treated like that because we are used to fake niceness.

• 56:50Speaker 02

  I know.

• 56:50Josh Clark?

  You know, and like, we're willing to go along with that kind of thing just to keep from a situation being uncomfortable.

• 56:56Speaker 02

  Yeah, also though, quick tip, uh, the, if you don't have anything nice to say, don't say anything at all. Uh, I recently went through an experience with a, uh, tattoo artist, uh, getting my, my, a tattoo covered up with my dogs and

• 57:12Josh Clark?

  It's a great tattoo.

• 57:13Speaker 02

  He, I appreciate it. He did a great job, but, um, he, let's just say we weren't the same kind of person. He had a lot of interesting theories on, on things. And here's a little tip to my Gen Z friends. You don't have to not say anything. Just keep nodding and go, interesting.

• 57:31Josh Clark?

  Oh, yeah.

• 57:33Speaker 02

  I'd do that over and over and over for hours.

• 57:36Josh Clark?

  It goes a long way.

• 57:37Speaker 02

  Yeah. Interesting. And sure. Well, no, I don't even know if I am lying. It was interesting.

• 57:44Josh Clark?

  Yeah, okay.

• 57:45Speaker 02

  Just not for me.

• 57:45Josh Clark?

  Right. Exactly. Maybe the tone was a lie.

• 57:49Speaker 02

  Maybe so.

• 57:51Josh Clark?

  The guy did do an amazing job. You said he did it like freehand too, right?

• 57:56Speaker 02

  Oh, yeah. I'll, I'll put pictures up at Chuck the Podcaster. Um, he's a sort of amazing artistic dude.

• 58:04Josh Clark?

  Yep.

• 58:05Speaker 02

  Just like looking at pictures of dogs and drawing them on my arm. It wasn't like stenciled out on my arm first.

• 58:11Josh Clark?

  It's nuts, man. Uh, well, thanks a lot again to Josie, Sam and Catherine for explaining that to us. You guys did a knockout job and we appreciate it. Uh, and I'm not being fake nice right now. I'm being quite legitimate and serious and genuine. If you want to get in touch with us and tell us about your generation, we love hearing that kind of stuff. You can send it off to [email protected].

• 58:39Speaker 00

  Stuff You Should Know is a production of iHeartRadio. For more podcasts, iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows.

• 58:55Josh Clark?

  Buy smart, drive for less, and trade for more. That's Toyota affordability. And it starts with a great deal on an off-road ready Tacoma or half ton Tundra, two of Toyota's longest lasting trucks, combining power for work, tech for adventures, and style in between. And they're built on a reputation for quality and reliability, which is why Toyota trucks are known for holding their value, which could mean big savings when it's time for your next Toyota. So get a great deal today and a great value tomorrow. Shop toyota.com for more. Toyota, let's go places.

• 59:26Speaker 02

  With no fees or minimums on checking accounts, it's no wonder the Capital One Bank got you. Guy is so passionate about banking with Capital One. If he were here, he wouldn't just tell you about no fees or minimums. He'd also talk about how Capital One cafes are open seven days a week to assist with your banking needs. Yep, even on weekends. It's pretty much all he talks about, in a good way. What's in your wallet? Terms apply. See CapitalOne.com/bankguy. Capital One, N A, Member FDIC.

• 59:53Josh Clark?

  Introducing Voices of VivGart. VivGart is also known as its generic name, Fgart Tigamod Alpha F Cam. And this new show features firsthand stories from people living with a rare disease. Hosted by Andrew Stratton, these perspectives highlight that life is more than a moment, a condition, or a tough day. Living with a rare disease can be challenging, but it does not define the Voices of VivGart. In these episodes, they share their stories, from diagnosis to working with their care team on their treatment plan. Listen to Voices of VivGart on the iHeart Radio app, Apple Podcasts, or wherever you get your podcasts.

• 1:00:26Speaker 06

  This is an iHeart Podcast. Guaranteed Human.