Everyone Deserves A Good Death

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Speaker 20 Welcome to Stuff You Should Know, a production of iHeartRadio.

Speaker 19 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

Speaker 19 and about something we need to talk about, Chuck. Okay?

Speaker 19 Okay.

Speaker 19 Do you remember back in like the

Speaker 19 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 whales and it was just a big thing that everybody talked about.

Speaker 21 When was this?

Speaker 19 Like 2009 to 2000 maybe 11.

Speaker 21 I don't remember that, but I'll take your word for it.

Speaker 19 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.

Speaker 19 Like that it's gone back to, death has gone back to being a bit of a taboo topic, an uncomfortable topic,

Speaker 19 at least here in the United States.

Speaker 21 I didn't know that either.

Speaker 19 It's true. I guess I'm just speaking for myself anecdotally.
Oh, okay. That makes a lot more sense.
So, okay, well, let's just cut to the chase here.

Speaker 19 There's this concept of a good death. Yeah.
Right.

Speaker 19 And

Speaker 19 you can probably fill in a lot of the blanks of what that means or 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.

Speaker 19 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 something.

Speaker 19 Being pain-free, not suffering. Sure.

Speaker 19 Being in an environment and having a chance to

Speaker 19 come to terms with the fact you're about to expire.

Speaker 19 Those are some of the top things that people say, like, this to me is a good death.

Speaker 19 And not coincidentally, those are the kind of things that hospices, which we're about to talk about today, are intended to provide.

Speaker 19 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

Speaker 19 educated. It's for everybody.
Everybody deserves to have a good death. And that's pretty much the

Speaker 19 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.

Speaker 21 That's great. It sounds a little too corporate slogan-y, but I like the sentiment.

Speaker 19 Yeah, there's a mascot, Louis the Dead Guy,

Speaker 19 who's like always saying that slogan. And he did a partnership with Home Depot for some reason recently.

Speaker 21 Oh, boy. Well, that explains the orange bed sheets and things.
Right.

Speaker 21 All right. So that's probably the last semi-joke we're going to make.
You'll have to forgive us for that. We did a whole episode on dying, and I don't even know if we made one joke in that one.

Speaker 19 So sure, we did. You think? Yes, I absolutely think.

Speaker 21 All right. Well, we'll pair that with this one.
And because we got a lot of great feedback on the dying episode and how that kind of helped people out. So

Speaker 21 maybe this will do the same.

Speaker 21 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,

Speaker 21 hospice has only been around since like the 60s or 70s and the form that we know it.

Speaker 21 Because previous to that,

Speaker 21 for all of time, basically, medicine was like, hey, we're here to cure people.

Speaker 21 And if it turns out that we cannot cure you and that the end is near for a very, very long time until the last, like, you know, like I said, since the 60s or 70s, very shamefully,

Speaker 21 hospitals and even doctors would sort of like,

Speaker 21 it was a reminder that they couldn't save you. So they they didn't spend a lot of time with you.

Speaker 21 And there are a lot of, you know, well-known reports of people kind of like scurrying past rooms where people were in their final days in a hospital and stuff like that.

Speaker 19 Yeah, they left the dying who were incurable now to basically die alone. They withdrew support.
That was just what they did. Like you said, it was a reminder of the failing of medicine.

Speaker 19 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.

Speaker 19 i mean i saw the um the infant mortality rate decline by 90 over the century there's like sanitation clean drinking water polo vaccine like science could do anything and people who were incurable were just a reminder that there were limits to that whole thing that's right uh and another thing that was going on and this is also pretty shameful well i guess not shameful but uh they've since revisited how they look at uh at pain management but yeah um you had to like

Speaker 21 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.

Speaker 21 They were worried about opioid addiction and stuff like that. But

Speaker 21 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.

Speaker 19 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.

Speaker 19 That's the point is to make the person comfortable.

Speaker 19 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.

Speaker 21 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.

Speaker 21 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.

Speaker 19 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.

Speaker 19 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.

Speaker 19 And that was in her 1969 book on death and dying.

Speaker 19 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,

Speaker 19 who were dying and just found that they were just being totally neglected. And so she definitely lobbied for dying and

Speaker 19 dying people and their families to be listened to and to be treated rather than just ignored.

Speaker 21 Yeah, we talked about her and that book in our dying episode.

Speaker 21 I don't think we talked about the denial of death from 1973, but that was from an anthropologist named Ernest Becker. And

Speaker 21 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.

Speaker 21 And he talked about sort of, you know, a good death and accepting the inevitability and stuff like that.

Speaker 21 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.

Speaker 21 Christopher's Hospice in London, and she really changed the game and kind of birthed the whole sort of modern hospice movement.

Speaker 19 Yeah, she had a bad back from a young age, and apparently it kept her from her desired career of nursing.

Speaker 19 So she instead became basically a social worker.

Speaker 19 At the time, they called a lady almaner or distributor of alms, right?

Speaker 19 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.

Speaker 19 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.

Speaker 19 And one of the other big experiences that led her to found the hospice movement, essentially, was she had

Speaker 19 like some friendships with some people that she helped essentially as they were dying and um 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 um i mean just kind of i think really gets across the kind of person she was and she went to medical school to make her voice a little more credible yeah she started medical school at age 33 uh this is in the 1950s and she finished medical school She was able to work as a physician.

Speaker 21 She started writing articles and stuff about this, about people 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 got to be a better way to take care of people.

Speaker 21 not only physically, but emotionally and spiritually as

Speaker 21 they near death.

Speaker 21 So she got that medical degree, got a research job at a hospital, started studying. She wanted to have a legitimate sort of background for this so people didn't think she was just some

Speaker 21 wacky empath trying to do good, which should be enough. But she figured if she was armed with medical training and real data

Speaker 21 on like pain management and stuff, that she would go a lot further. And she did.

Speaker 19 Yeah, she went and studied pain management firsthand so she could come up with her own protocols.

Speaker 19 One of those protocols that was really groundbreaking and went against the norm was to 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.

Speaker 19 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.

Speaker 19 But she had before and after pictures of these people, terminal cancer patients who

Speaker 19 in the before pictures, before they had been treated with her new new protocol of pain management and I guess mood management too, if you think about it,

Speaker 19 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.

Speaker 19 And she would show these before and after pictures when she went around the world speaking on behalf of hospice as she was trying to found it.

Speaker 19 And like she would get converts at every talk she gave just from the before and after pictures alone.

Speaker 21 Yeah, it was pretty remarkable. This all culminated in 1967 when she founded St.
Christopher's Hospice, like I mentioned earlier in London.

Speaker 21 And kind of right off the bat, she said, all right, we have a new way to deal with pain management.

Speaker 21 We're going to get rid of visiting hours and people, family can come and go when it's convenient for them.

Speaker 21 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.

Speaker 21 You know, like we mentioned, emotional support,

Speaker 21 social support, spiritual suffering that happens with people.

Speaker 21 And one of the people that she worked a lot with was a nurse in the U.S. named Florence Wald, who ended up doing the same thing in the U.S.
She said, I think we need this over here.

Speaker 21 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.

Speaker 19 Yeah, that first American hospice, they tried a few names out before they settled on the final one, hospice R Us,

Speaker 19 McDying,

Speaker 19 and then they just kind of went with the straight name. Wow, all right.

Speaker 19 So, um, yeah, so hospice that spread pretty quickly. I think you said St.
Christopher's opened up in 1967,

Speaker 19 um, and uh, the one in Branford opened up in 1973. That's pretty good traction to create a brand new idea in both the UK and the US and start spreading it around the world.

Speaker 19 And one of the things I think you said said about St. Christopher's was even though it was religious or at least spiritual, it was non-denominational.

Speaker 19 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.

Speaker 19 And like, if you're not, say, Christian, you wouldn't really want to go to a Christian hospice. That is not at all the way that hospices work.
And in fact, there's plenty of people who are atheists.

Speaker 19 They are humanists.

Speaker 19 And they just are like those empathic do-gooders that you were speaking about earlier.

Speaker 19 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.

Speaker 19 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.

Speaker 21 Yeah, for sure. In the U.S., U.S., it's usually,

Speaker 21 or at least at first it was done at home. That was a difference from the early ones in the U.K.
They were inpatient facilities.

Speaker 21 But in the U.S., 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.

Speaker 21 And there was also this sort of long-running institutional distrust that Americans had.

Speaker 21 And it was a lot of volunteer work at first, like almost entirely volunteer early on.

Speaker 21 It was sometime, like we mentioned, people in the clergy still doing this kind of work after centuries of doing so.

Speaker 21 Doctors that were moonlighting that wanted to help out. And a movement was,

Speaker 21 you know, clearly growing.

Speaker 21 And it made government sit up and take notice when they realized that it was saving money on health care because not only was the movement growing and people were just feeling better about it, but it was keeping people out of the hospitals sort of off and on, off and on, off and on.

Speaker 21 And so much though that the U.S. government and the Reagan administration said, you know what,

Speaker 21 we should get this covered. And in 1982, the hospice

Speaker 21 Medicare benefit went through, which allowed people all of a sudden to be able to pay from

Speaker 21 staff run by professionals that were also paid and get it covered through Medicare.

Speaker 19 Yeah, which opened up the door for people who wanted to help people during the the final days or weeks of their life, but there wasn't a career associated with it. Now there was.

Speaker 19 So you could pursue that kind of medicine, end-of-life medicine.

Speaker 19 That's pretty cool that that was a huge change.

Speaker 19 I suspect that the saving money had a lot to do with it, though. Yeah.

Speaker 21 That's usually the case.

Speaker 19 And the reason why, let's just spell it out explicitly.

Speaker 19 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,

Speaker 19 You're not going to go for the curative treatment route anymore.

Speaker 19 We're going to take you out of this crazy, nut-so-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.

Speaker 19 And it's just much cheaper to do that, too, as you can imagine.

Speaker 19 It feels like a good breakpoint. Yay? Yay.
All right.

Speaker 21 We'll come back and we'll talk about how the modern system works right after this.

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Speaker 19 So here in the United States, Chuck,

Speaker 19 hospice is usually paid for by Medicare, which is federal

Speaker 19 insurance coverage for people who are retirees typically or maybe disabled. And then also sometimes Medicaid, which covers lower-income Americans.

Speaker 19 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.

Speaker 19 And that is a wonderful thing that the federal government does.

Speaker 19 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.

Speaker 19 But there's eligibility requirements that basically say, like, if you don't check these boxes or if you stop checking these boxes at any point, you can't be in hospice anymore.

Speaker 21 Yeah. And those boxes specifically, you have to have two doctors certify that you have a, and this is for Medicare, you know, to get it covered, not just to get into hospice.
Right.

Speaker 21 You have to have a terminal illness.

Speaker 21 You have to have six months or less to live. And you cannot be going after curative treatments.
And we'll talk about some,

Speaker 21 I don't even know if they're exceptions, but some things that some people might think are curative treatments and aren't curative treatments. That doesn't mean like,

Speaker 21 don't ask for anything at all.

Speaker 19 You know, you can't have a band-aid.

Speaker 21 Yeah, you're on your own. So we'll get into those.
But

Speaker 21 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

Speaker 21 hospice

Speaker 21 companies and agencies a daily rate instead of for specific services they provide, like

Speaker 21 like basically all the other medical treatment you're ever going to get.

Speaker 21 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.

Speaker 19 Right.

Speaker 19 So

Speaker 19 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.

Speaker 19 And that 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.

Speaker 19 They're just essentially just checking on you. That's routine home care.

Speaker 19 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, all of a sudden now they have 24-7

Speaker 19 hospice access at home.

Speaker 21 Yeah, there's also there's a couple of more. There's inpatient respite care.

Speaker 21 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.

Speaker 21 A lot of times this is to give their caregiver time off because that's one of the brutal parts about end of life is

Speaker 21 And I say burden on the family, not like what a hassle, but you know, it is a burden on the family. Yeah.
People have to,

Speaker 21 besides the emotional devastation they're going through, a lot of times have to rearrange their

Speaker 21 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.

Speaker 19 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.

Speaker 19 And that's a, that's, that's, it is, it's a very big deal. Yeah.

Speaker 21 And then the last one is general inpatient care.

Speaker 21 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.

Speaker 21 It's not the kind of thing you can do at home generally.

Speaker 21 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.

Speaker 21 You know, I mentioned things that don't count as curative treatment, like if you're,

Speaker 21 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,

Speaker 21 that's not going to boot you off

Speaker 21 covered hospice care to get that taken care of.

Speaker 19 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 terminally ill.
Right.

Speaker 19 So like you said, if you have develop a heart condition, but that's not what's killing you, you have terminal cancer, they can treat your heart condition.

Speaker 19 And even if you do have terminal cancer, if you have nausea from cancer or pain from cancer, they're going to treat that because they're not trying to cure the cancer.

Speaker 19 You have to give up things like radiation or chemotherapy. Those are curative treatments.

Speaker 19 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 you have to give up in in order to enter hospice.

Speaker 21 Yeah. And, you know, the hospice workers are doing

Speaker 21 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.

Speaker 21 Like there's all that stuff that they're doing, bathing you,

Speaker 21 housekeeping sometimes, you know, helping out with gathering and administering the medications.

Speaker 21 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,

Speaker 21 like we mentioned, the people in your family that are caring for you, like to give them a break. They may help with fundraising.

Speaker 21 If you have like, you know, money you need raised for your treatment, they may bring in music and comedy performances to hospice centers.

Speaker 21 people that cut hair, like volunteers that will come in and style somebody's hair even.

Speaker 21 I remember that was a big deal for Emily's grandmother near the end is, you know, she wanted her hair done and to look like she looked.

Speaker 21 And that stuff goes a long way to just putting people at ease, you know.

Speaker 19 Oh, for sure.

Speaker 19 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.

Speaker 19 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.

Speaker 19 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.

Speaker 19 And just being a human being who can drive a car over to somebody's house is essentially the qualifications.

Speaker 19 That's basically all you need to do. And they'll tell you what to do from there.
But no one would expect you to like, you know, inject the person.

Speaker 19 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.

Speaker 19 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 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.

Speaker 21 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.

Speaker 21 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.

Speaker 21 Some people are just wired this way as empaths to want to help people.

Speaker 21 And then sometimes it's people that are preparing for a career in healthcare.

Speaker 21 And, you know, getting in a hospice and kind of going through the worst of the worst situations is, I imagine, pretty good preparation on dealing with any kind of patient.

Speaker 19 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,

Speaker 19 and just general aides

Speaker 19 who can come together and help with that.

Speaker 19 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.

Speaker 19 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.

Speaker 19 So if you have all these people coming together to treat the person's total pain, you have a much calmer, happier. again, good death.

Speaker 19 And those are called in the hospice industries, interdisciplinary groups. And they do.
They form a team for each patient to figure out what to do for each of the patients to help them

Speaker 19 basically find peace and comfort and calm.

Speaker 21 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 downsides of that in a little bit.

Speaker 21 But statistically,

Speaker 21 from 2,000 hospice centers in 2001

Speaker 21 to about 5,700 today,

Speaker 21 you know, 24, 25 years later, it's really grown a lot. Utilization grew by 32% between 2013 and 2022.

Speaker 21 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%.

Speaker 21 About half of people now in the United States enroll in a hospice before their death.

Speaker 21 If you have cancer, you're far more likely to do so, as well as being female and more educated and also older,

Speaker 21 which at first seemed like a,

Speaker 21 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.

Speaker 19 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.

Speaker 19 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.

Speaker 19 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.

Speaker 19 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.

Speaker 19 We recommend that you go into hospice and have like good last days. Hang out with your friends and family.
Like be peaceful.

Speaker 19 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.

Speaker 19 That toward the end in the last, you know, few weeks, your cancer team says you've reached the incurable stage. There's nothing we can do for you anymore, except let's put you into hospice.

Speaker 19 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 spend like the last couple or few days in hospice and they don't have a chance to actually

Speaker 19 develop what again is referred to as a good death.

Speaker 21 Yeah, and

Speaker 21 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.

Speaker 21 A lot of reasons. Maybe you're being monitored a little more closely.

Speaker 21 Maybe your symptoms are being managed a little

Speaker 19 better.

Speaker 21 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,

Speaker 21 studies show that you can make it a little bit longer.

Speaker 19 Yeah, that actually happened to Yumi's dad. He was in hospice and given.
Oh man, I remember. Not very, yeah.
It was just

Speaker 19 a pretty raw time. He was given not much time to live at all, I think like days.

Speaker 19 And he

Speaker 19 didn't pass. And Yumi started to notice he was actually kind of, he was eating more.
His mood was starting to improve. And she convinced the hospice doctor that he was not dying anymore.

Speaker 19 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.

Speaker 19 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.

Speaker 19 So at home, you can just get better and better. And

Speaker 19 Yumi's dad eventually left hospice, was discharged alive and went on to live for another three years.

Speaker 21 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.

Speaker 19 Yeah.

Speaker 21 And then I just, I think we all suspected it was just going to happen again right after that. And it was, yeah, it was a few years.
It was just, what a story.

Speaker 19 Yeah. I'm, 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.

Speaker 19 And she had to convince everybody else, including me, that no, he's not dying. And she brought him back for sure.
So, yeah. What a gift.
It really was a gift. I'm, yeah, I'm very proud of her.

Speaker 19 All right.

Speaker 21 Shall we take another break?

Speaker 19 I think we should, man.

Speaker 21 All right. We'll be right back and we're going to finish up with hospice right after this.

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Speaker 21 Hey, it's Ed Helms, and welcome back to Snafu, my podcast about history's greatest screw-ups. On our news season, we're bringing you a new Snafu every single episode.

Speaker 18 32 lost nuclear weapons. You're like, wait, stop?

Speaker 19 What? Yes.

Speaker 21 Ernie Shackleton sounds like a solid 70s basketball player. Who still wore knee pads? Yes.

Speaker 19 It's going to be a whole lot of history, a whole lot of funny, and a whole lot of guests.

Speaker 21 The great Paul Scheer made me feel good.

Speaker 19 I'm like, oh, wow.

Speaker 22 Angela and Jenna, I am so psyched you're here.

Speaker 18 What was that like for you to soft launch into the show?

Speaker 19 Sorry, Jenna, I'll be asking the questions today.

Speaker 18 I forgot whose podcast we were doing.

Speaker 21 Nick Kroll, I hope this story is good enough to get you to toss that sandwich. So

Speaker 19 let's see how it goes.

Speaker 21 Listen to season four of Snafu with Ed Helms on the iHeartRadio app, Apple Podcasts, or wherever you get your podcasts.

Speaker 21 One thing we should mention kind of briefly, we don't have to get too much into it, but hospice and

Speaker 21 right to die and assisted dying,

Speaker 21 these are two things that don't go together, but they obviously kind of do go together in a lot of ways because you've got

Speaker 21 a group of people that are,

Speaker 19 it's the same group of people mainly.

Speaker 21 It's even,

Speaker 21 I think, legally designated in places where you do have the right to die.

Speaker 21 You have to have doctors sign off that you're within six months and there is no cure. And it kind of is in lockstep with hospice, but it's not the same thing because the, you know, it's it's just not.

Speaker 21 The World Health Organization very much defines palliative care as something that neither hastens nor postpones death. It is not the point of hospice to go in and,

Speaker 21 you know.

Speaker 21 find an empath who will who will help assist you along a little quicker.

Speaker 21 If you live in one of those states, I think it's an amazing gift to be able to do that. And

Speaker 21 there's a track for doing that, but it's not hospice.

Speaker 19 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.

Speaker 19 And hospice people are like, no, we know how to end their suffering without them having to die. Yeah.
And that's why it really gets under their skin.

Speaker 19 Although that said, there are plenty of hospice people, probably humanists, who are like,

Speaker 19 it's anybody's inalienable right to choose how or when they die.

Speaker 21 Yeah.

Speaker 19 So, yeah, it is kind of a tricky thing, but it isn't, I think it is generally unfairly associated with hospice.

Speaker 19 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.

Speaker 19 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?

Speaker 19 So 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.

Speaker 19 And it has nothing to do with assisting someone and dying. It has to do with helping them die comfortably when they die naturally.

Speaker 21 Yeah. And, you know, you're not going to get,

Speaker 21 you'll get morphine and you'll get like the good stuff

Speaker 21 these days. Morphine Plus, but you're not going to get the cocaine and the liquor.

Speaker 19 No, I mean, unless you have a family member who knows somebody.

Speaker 21 Yeah, I mean, there's somebody's got a guy, maybe. Yeah.
Or if you just have like a, you know, pretty

Speaker 21 empathic, like really empathic, like on the down low hospice worker. Right.

Speaker 19 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.
He's like, no, I'm good with the pain stuff I'm on now.

Speaker 21 Yeah.

Speaker 21 And then what to do with it, you know?

Speaker 21 Hey, look, we found another joke. Amazing.

Speaker 19 So

Speaker 19 right before the dark side. Yeah, because there is a dark side to this.
And again, the one downside to hospice is it puts, it's just the burden on the caregivers.

Speaker 19 We'll talk a little bit more about that in a second. But 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

Speaker 19 theme in our private equity episode, we should say that there are plenty of for-profit

Speaker 19 hospices that are perfectly well run.

Speaker 19 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.

Speaker 19 Where they start to get lower marks than other kinds of hospices, specifically nonprofit hospices, is when they are part of a publicly owned corporation, like a hospice went with the IPO at some point.

Speaker 21 Yeah, like a chain.

Speaker 19 Exactly. Or, surprisingly,

Speaker 19 or not, private equity owns the hospice.

Speaker 19 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.

Speaker 21 Yeah, there was a survey in 2024 that 25% of hospices in the U.S. are owned by private equity firms now.

Speaker 21 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.

Speaker 21 They don't get paid out per treatment given or for specific treatments given. It's just this flat fee.

Speaker 21 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,

Speaker 21 Very sadly, many times you're going to get hospice centers that

Speaker 21 get that flat rate, but they're cutting staff and people are getting the bare minimum treatment required by law.

Speaker 19 Right.

Speaker 19 And I saw 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.

Speaker 21 Yeah, just twice a month?

Speaker 19 Right. And then a lot of for-profit hospices

Speaker 19 just basically do that minimum. And if you, most people agree, if you are in some sort of crisis, you're getting more visits.

Speaker 19 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 keep costs down. It turns out that's a myth.

Speaker 19 The 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.

Speaker 21 They have no requirements or they're not enforcing anything?

Speaker 19 They don't have any requirements. And that's another problem, too.

Speaker 19 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.

Speaker 19 Luckily, most of the people who run hospice companies,

Speaker 19 they're not in it to abuse the system.

Speaker 19 They're in it to help people. But

Speaker 19 there is a place for bad actors to milk the system, overcharge. Like apparently, it's extremely complex, but there are ways that you can charge more than the flat rate per day.

Speaker 19 And I guess a study from, I think, 2021 in the Journal of Geriatric Care, I think,

Speaker 19 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. Yeah.

Speaker 21 And, you know, to be clear, hospice in general gets good marks from people.

Speaker 21 Even for-profit hospices generally get good marks from people.

Speaker 21 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

Speaker 21 do your research if you're getting into this because there's there are all, like we said, there's 5,700 of them in the U.S.

Speaker 21 And hopefully there there is one near you that will take care of you a little bit better.

Speaker 21 To remain on hospice, there's also all kinds of rules as far as what's called live discharge. Right.

Speaker 21 You have to demonstrate ongoing steady decline

Speaker 21 at recertification intervals every 90 days for the first six months, then every 60 days after until death or discharge.

Speaker 21 And discharge is basically exactly what it sounds like. You're discharged, like you're discharged at a hospital.

Speaker 21 It may be because you want to try, you know, curative care again, which is, which is great and you're right.

Speaker 21 It could be because of an emergency that you have to go to the hospital for, which will boot you off, which really stinks.

Speaker 21 But there are guidelines about discharge and not all of them seem fair.

Speaker 19 Yeah, and you can imagine if you're dying of a terminal illness, being moved from a hospice to a hospital.

Speaker 19 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.

Speaker 19 It's not a comfortable thing to be discharged from one place to another.

Speaker 19 It's also a huge burden on the family too, because again, the care is being transferred from medical professionals to the family.

Speaker 19 But also 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.

Speaker 19 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.

Speaker 19 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 hospice rules.

Speaker 19 But apparently that is not, that's not happening right now.

Speaker 21 Yeah. And even if, you know,

Speaker 21 you aren't moved home, let's say, let's say you move to a different facility, because there definitely is a problem with

Speaker 21 not having enough beds at different places.

Speaker 19 And

Speaker 21 the family can get ideally into a routine at least.

Speaker 21 And they kind of figure it out.

Speaker 21 And then with Emily's grandmother, it seemed like once 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.

Speaker 21 And then all of a sudden it's

Speaker 21 new visiting hours. It's in a different place and everyone, and that's just on the family, of course, just like you mentioned, the move for the patient is really burdensome.
So

Speaker 21 there's still so much they can do, I think, to clean this whole system up, you know.

Speaker 19 For sure. And even, Chuck, if they're not inpatient, just at home,

Speaker 19 hospice basically overlays the 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.

Speaker 19 If you need a walker, you got a walker.

Speaker 19 Just all of this support, like you've got bereavement counselors dropping by, you have a social worker you're doing telehealth visits with.

Speaker 19 Like all that 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.

Speaker 19 You might not even have those prescriptions any longer after that. If they were prescribed by the hospice doctor,

Speaker 19 it's a really really bad jam.

Speaker 19 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

Speaker 19 pay rating, I guess, is in-home non-crisis hospice care.

Speaker 19 And that means that if you are

Speaker 19 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.

Speaker 19 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 not enough pay to pay people in hospice to come by and not enough volunteers to take care of you,

Speaker 19 take care of your needs on a regular basis.

Speaker 21 You know, Grandma Mary.

Speaker 21 former foremost general in the Stuff You Should Know Army,

Speaker 21 had a t-shirt that says, You can take my walker when you pry it from my cold dead hands.

Speaker 19 That's all. I would love that, dude.
Oh my God, that would be such a great t-shirt. We got to get that one up.

Speaker 21 Can you imagine taking a walker from somebody? Like, for that, that's your job. Like, you're the person that you're like, yeah, go over to

Speaker 21 Grandma Mary's house and take her stuff.

Speaker 19 I know.

Speaker 19 It couldn't even be the person who also delivers it because it's such a mean job that there has to just be one specialist who doesn't like anybody who just goes around to houses and takes the medical equipment back.

Speaker 19 Yeah.

Speaker 21 send Ronnie.

Speaker 19 You got anything else?

Speaker 21 No, I have nothing else. Hopefully this serves some people.

Speaker 21 And, you know, just look around and do your homework and see if you can find a place that works for you and your family.

Speaker 19 Yeah. And another good piece of advice is to do that sooner than later.
Like

Speaker 19 share your wishes with your family. Maybe even go so far as to create a living will or some sort of medical document saying like, I do want to go into hospice.

Speaker 19 I want to stop curative treatment at some point.

Speaker 19 and then yeah do like read reviews 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 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 that's right you want to impress your parents and you're seven Start thinking about a living will.

Speaker 19 Start talking about a living will to your parents and they will just be blown blown away.

Speaker 21 Totally. That seems like something in a TV show about a precocious kid.

Speaker 19 Yeah, for sure. Like Alex P.
Keaton, he would do that.

Speaker 21 Yeah, exactly. Hey, you know he had one.

Speaker 19 So before we finish, I just also want to give a huge shout out to Yumi's dad's hospice doctor, Dr. Pajari,

Speaker 19 who did not have any sort of ego and was totally willing to listen to Yumi and helped. get her dad out of hospice too.

Speaker 21 So I love it.

Speaker 19 Shout out Dr. Pajari.
And since I shouted out Dr. Pajari, as was foretold by the runes in 2008, I've just unlocked listener mail.

Speaker 21 This is Gen Z Stare Speaks Back. I have three emails I'm going to try and sort of hit the highlights of because

Speaker 21 we got what I felt like was three really sort of legitimate answers as to what the Gen Z stare is all about that

Speaker 21 that now I understand.

Speaker 21 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 that's true uh hey guys 22 years old gen z very much in the gen z stare era uh i work in customer service which is where i use it the most

Speaker 21 but uh we were raised with if you have nothing nice to say don't say anything at all so hence staring uh so i guess they took that very much literally yeah um it's not something just done to adults either and this person uh 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.

Speaker 21 I didn't know that was a thing. When they answer the phone, it cues the robot.

Speaker 19 Did you know that? Yes.

Speaker 21 Okay, I didn't know that. So I just answer and sit in silence until the awkward is this Josie follows.

Speaker 21 And that is from Josie Boozer. This is another one.
Hey guys, Gen Z person.

Speaker 21 I think the explanation you're probably looking for is a lot of Gen Z are using it to

Speaker 21 are used used to being interrupted, not

Speaker 21 taken seriously, or have our responses to stories be given a weird look.

Speaker 21 The example of where someone finishes a story and the person just standing 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.

Speaker 21 Two, I'm so used to having my opinions not taken seriously that I'm just not even going to bother responding.

Speaker 21 Many of us are socially awkward and have trouble creating small talk with people that aren't close to us. Another reason may be because most of our conversations are online and have been online

Speaker 21 as we aged and many people will give an emoji reaction to a long story

Speaker 21 or just get a smile and that's cool in response.

Speaker 21 That is from Sam. Okay.
So it's kind of tracking along the same lines. Right.
And then this is from Catherine

Speaker 21 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 live through the same period.

Speaker 21 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.

Speaker 21 You would look crazy if you responded to a YouTube video the way you would a phone call or an in-person conversation.

Speaker 21 So we're a little out of practice with responding to prompts instead of just watching something. This all makes total sense.

Speaker 19 It totally does.

Speaker 21 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.

Speaker 21 I think this is partially because we're constantly inundated with advertisements.

Speaker 21 We become highly sensitive to fake niceness because someone is trying to manipulate our emotions at every turn and sell us something.

Speaker 21 My generation seems much more likely to prefer genuine reactions, even if they're negative, because when we're online, that's the only way to know that something is not an ad.

Speaker 19 Woo!

Speaker 21 Man, this is something else, huh?

Speaker 19 Yeah, those are deep.

Speaker 19 From Josie, Sam, and Catherine, right?

Speaker 21 Yeah, and I think they all sort of track along the same lines, and that explains a lot. So,

Speaker 21 yeah, if a Gen Z person is just staring at you,

Speaker 19 maybe they think you're a real jerk and just don't want to say anything.

Speaker 21 Right.

Speaker 19 They assume you're manipulating them right then.

Speaker 21 Yeah, or the other reasons mentioned. I think they're all valid in their own generational way.

Speaker 19 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. I know.

Speaker 19 You know, and like we're willing to go along with that kind of thing just to keep from a situation being uncomfortable.

Speaker 21 Yeah. Also, though, quick tip,

Speaker 21 if you don't have anything nice to say, don't say anything at all. I recently went through an experience with a tattoo artist

Speaker 21 getting my

Speaker 21 tattoo covered up with my dogs.

Speaker 19 And this guy did a,

Speaker 21 I appreciate it. He did a great job.
But

Speaker 21 he, let's just say we weren't the same kind of person.

Speaker 21 He had a lot of interesting theories on

Speaker 21 things.

Speaker 21 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.

Speaker 19 Oh, yeah.

Speaker 21 I did that over and over and over for hours.

Speaker 19 It goes a long way.

Speaker 21 Yeah. Interesting.
And sure.

Speaker 19 Well, no, I don't even know if I am lying.

Speaker 21 It was interesting.

Speaker 21 Yeah,

Speaker 21 just not for me.

Speaker 19 Right, exactly. Maybe the tone was a lie.

Speaker 19 Maybe so.

Speaker 19 The guy did do an amazing job. You said he did it like freehand, too, right?

Speaker 21 Oh, yeah. I'll put pictures up at Chuck the Podcaster.
He's a sort of amazing artistic dude.

Speaker 19 Yep.

Speaker 21 Just like looking at pictures of dogs and drawing them on my arm.

Speaker 21 It wasn't like stenciled out on my arm first.

Speaker 19 It's nuts, man.

Speaker 19 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.

Speaker 19 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.

Speaker 19 You can send it off to stuffpodcast at iHeartRadio.com.

Speaker 1 Stuff You Should Know is a production of iHeartRadio. For more podcasts from iHeartRadio, visit the iHeartRadio app, Apple Podcasts, or wherever you listen to your favorite shows.

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