What happens when you place trust in your doctors but then feel misled?

Tom Hinueber encountered two different healthcare experiences in the course of a weekend that each made him question his trust and belief in our healthcare system.

1. How do we treat noncompliant mentally ill patients?

Tom’s mother, who suffers from bipolar disorder and is treated by a psychiatrist, was hospitalized for a surgical consult of a potentially malignant growth on her arm. Failing conservatorship in the past, she refused surgery and ultimately signed out AMA in a very brief moment of apparent lucency. Was she really competent to leave?

2. Are patients with life-threatening illnesses exploited when they are most vulnerable?

Tom’s father has stage IV prostate cancer, which has now metastasized widely. He was offered an experimental treatment and was quoted $22,000. After the completion of this procedure, he was sent a bill for $100,000, an astronomical amount that could bankrupt a household. Patients are vulnerable and emotional at the end of life, especially when they are in pain…so are there doctors out there who abuse the trust of patients to make a profit? Tom questions,

“If you [the doctor] can’t protect the person you are asking to trust you, why do you think you deserve any trust? That doesn’t make any sense to me.”

But is it ultimately our system (a series of backwards incentives) that leads to these situations and outcomes?

ZPac, do you have any stories that you can share with us? Let’s hear them in the comments on Facebook. Check out the original episode and tell us what you think. Comment and please share, it helps grow our movement more thank you know!



- Yo, Z Pack, it's your boy ZDoggMD. Today, we're doing something really special, 'cause apparently, the weekend's over, Tom and Logan show up this morning, we all meet, and I'm like, "Tom, how's your weekend?" He says, "Uh, I don't wanna tell you about my weekend unless there are cameras running." And I thought, "Oh, here we go, it's gonna be some debauched mess." But he said, "No, it's about healthcare and we need to do this." So I actually have no idea what's going on. Tom, tell us about your weekend.

- Okay, first of all, my weekend was the worst weekend of all time, and not just because Bitcoin was down, although that did play a factor, I'm not gonna lie. Here's what happened. We get back from San Francisco, me and you, right? And our flight was delayed first of fall. That sucked.

- I remember that.

- Okay, 'cause there's always fog and that stuff though. We get back, I'm late, I go to a wedding, my car dies. I went to a Macedonian wedding, by the way, Z.

- Is that a thing?

- It was really weird. There's something called the Money Pig dance they do. I don't know, anyway.

- Sounds like Tuesday around here, man.

- I get back, my car dies, I get a text that night. Late at night, I'm taking an Uber back from this wedding all the way on the other side of town. And it says, "Your mother's in the hospital." It's from my father, "Your mother's in the hospital. She has this big growth on her arm." Something I knew nothing about. It turns out it's probably a malignant tumor, although I don't know, because we never were able to get her biopsied, because my mother is extremely bipolar and is noncompliant as hell, so you can tell how fun my weekend is already starting to be, right?

- Wow.

- On top of this, my mother's in the hospital, she's been admitted, my father is dying of Stage IV cancer, prostate cancer, that has now spread and is widely metastatic. It's in his liver, it's everywhere, he's actively dying. And he was talked into getting an experimental procedure to the tune of something like 22000 dollars, right? What do you think about that when you hear that, first of all?

- I mean, I know your dad, so I'm reluctant to comment.

- Right.

- But I would say, my instinct is always, there are a lot of people who pedal hope for high prices in the cancer space, so I would hope that it's a science based technique.

- You would think it would be science based, right? Probably is, but then you get the bill back and it's 100000 dollars, and that's not the price you were quoted.

- Oh wow.

- Right. On top of that, last night, my mother leaves AMA from the hospital, which they mark as AMA, so now Medicare won't pay for her stay. So this is gonna be like another 30, 40, 50000 dollars. This gets me thinking, now here's the deal, I'll just say this disclaimer, my family has a little bit of money, like we can pay for this. It doesn't feel good to pay for this. This is a lot of money for what was ostensibly nothing, right? But we can pay for it. But it got me thinking, what if you're the average person and a doctor quotes you 20000 dollars, which is already astronomically high, and then you get the bill back for 100000 dollars? That's a bankruptcy, right? But why did you take the quoted price? Because you trust the doctor. So why does the doctor deserve your trust when he can't protect you?

- Man, I would be so pissed right now.

- Yeah.

- Yeah. I mean, what?

- From my perspective, my mother, who's extremely bipolar, is marked AMA, because everybody else is covering their own ass, right? It's a legal thing, but now that she's marked AMA, they're gonna treat her like anybody who's AMA and they're gonna make her foot the bill for her stay. Correct?

- So, but she has mental illness, so was she competent to make the decision to leave AMA?

- No, of course she's not competent. She's not competent to do anything.

- So tell me about the thing on her arm. So she's not told anybody about this?

- So she's been hiding this malignant tumor under her arm, which my mother is like, obese, and so you can't tell, it's just looks like a whole bunch of whatever is under there, and so there's a thing, like a baseball sized thing on her arm, and she doesn't want treatment for it. She basically wants to go home and actively die, and that's essentially what she told everybody at the hospital, but me, her son, there's no way I can get her to do this, which she clearly needs to just have it removed, which seems like it would be a general surgery, a nothing thing. I can not compel her to do this.

- And, oh my God, I mean, there's so much here. She's not conserved, right? You're not her conservator, you don't have...

- We don't have a conservatorship over her, because...

- Neither you nor your father?

- No, because one of the things about my mother, she's highly intelligent, and so anytime she has been, we try to get a conservatorship, she can seem lucid to the authorities. So it's ridiculously hard to get a conservatorship over somebody.

- So I'm assuming the folks at the hospital felt she was lucid enough to make this decision then.

- Probably, yeah.

- And therefore, she was competent against medical advice leaving.

- She's not though. If I told you the dosage of Risperidone my mother takes, it's like astronomical, you know. It's basically the most a human person can take.

- So here's where it gets real tricky. If she's treated and she's deemed competent, you're in a real tough position, right? Because she's a competent actor because she is under treatment, even if it's a high dose of Risperidone or whatever.

- This is the whole point though, she's lucid one moment and she's not lucid the next moment. So one moment, the doctor's there, she would seem like a competent person who could make her own decisions. The next moment, she's telling me that I'm a robot and that my wife is a robot, and she doesn't know who we are and these happen within three minutes of each other, right? But the doctor is there for five minutes and gets to make this sort of decision.

- So in your estimation, they've completely missed her competence in the hospital, let her sign out AMA, you can't get a conservatorship for the same reason. She has potentially a dangerous or life threatening arm malignancy, although it hasn't been biopsied, so we don't know for sure, but it looks bad to your eye?

- And at the same time, during the same weekend, I'm feeling like these people in the oncology, you know, whoever's dealing with my father, I feel like they're taking advantage of him, because he's a lawyer, he thinks of himself as a man of science. He's like, "If it's on the cutting edge, I'll do it." You know, et cetera. And they're just taking his money for nothing.

- So what happened there? 'Cause you had told me about this earlier, that he was gonna do this experimental treatment, it was gonna cost X, the doctor had laid it out for him. Did the doctor say, "It's gonna cost X."?

- Here's what happened, I think, reading through the lines, because thisgets super complicated, and I can never get a clear answer out of anybody as to what is happening, but reading through the lines, I think the doctor, his oncologist, told him how much it was gonna be, 20-ish thousand dollars. My father is okay, he's well off, I consider him upper middle class. So he thought, 20000 no big deal, I'll do that. If it's got a chance at saving my life, sure. And he made his peace with that price and he was okay with it. Morning of the procedure, they stick a waiver under his nose right before he's about to go in that says, "You could be responsible for up to 100000 dollars." And then, of course, who does it benefit, Z? Where does it come out? It comes out at 100000 dollars.

- That issick, man. It really is.

- So, my question to you is why do doctors think they deserve our trust when there are, I don't wanna say that these are doctors abusing the trust out there maliciously, but there is at least this heavy degree of turning a blind eye to all the outside factors that are going on and they're standing in the middle of it being patriarchal and saying, "I am the doctor, trust me, I know what it's gonna be, it's gonna be 20000 dollars." And then it's 100000 dollars or it's, "I'm the doctor, trust me, I can protect you." And then they sign them out AMA when they're clearly not competent. Like what's going on, ya know?

- You know, you have every right to be angry on both those counts, right? There are a lot of weird subtleties, especially in your mom's case. In your dad's case, I think I can pretty fairly say that physicians who, this lack of price transparency, physicians who take advantage of people at the end of life, and I'm not saying that's what happened with your dad, I'm saying that people who do that ought to be drug out into the street and removed of their license, because they violate exactly what you said, which is the reason that physicians have any authority at all, which is trust. And if you're violating trust and it looks like you're there for a profit motive, and this is why anti-vaxers don't trust us, this is why the erosion of trust in general has happened, this is why nurses probably have a higher trust, because they are not making money hand over foot on dying cancer patients. And I think that's a huge piece that we in healthcare, if we fail to acknowledge it, then we're missing the boat. And I'm gonna get angry messages even for saying this, but I think that doctors who operate in those circumstances need to take a good, hard look at not at just what they're doing, but how they're affecting the perception of the entire profession. We need full transparency on what things cost. You don't go to a mechanic and not get an estimate.

- Or if you quote me one thing for a job and then it's something five times higher and it's always to your benefit, how can you be trusted?

- And this is the thing with fee for service medicine.

- That's called a scam artist, that's a scam.

- Exactly. Now again, I know you're angry in particular, and you have every right to be.

- I don't think I'm unreasonable, though. I don't feel like I'm the kinda person who's asking for miracles from the medical system. I'm asking for people to be good people and work within the system to the best of their ability. And I'm not seeing that from anybody.

- And honestly, I can't disagree with your experience. I mean, that's what it feels like. Now, what you'll notice now, it's funny, because even you telling me this story gets me mildly defensive for the profession, because I'm like, "We're not all like that, Tom. We work really hard, you don't see the stuff on the back end." but the truth is, the truth is, guys, let's be deadly serious and honest for a second, we do behave like this on way too many occasions. And by we, I mean there are members of our profession who do do this, we do drop the ball. We do have a system that encourages this behavior. It's not all just bad actors. It's a system issue, but if we don't own it, if we don't actually look at what Tom is saying right now and go, "My family had an experience like that, and my family had a different experience very similar." You are gonna see in the comments, I guarantee you, thousands of angry stories that are very similar, if not worse, to what you've experienced. So I have to say, we have to fricking own this and see what we can do to make it better instead of making excuses, because we're very good at that, because we're in our own disastrous form of suffering as well that we talk about everyday on the show. What we don't focus on enough is stories like what Tom is saying where we have really dropped the ball. You know, when we reviewed the resident...

- I just, let me say this, if you can't protect the person you're asking to trust you, why do you think youdeserve any trust, why? That doesn't make any sense to me.

- What could have been done differently for your mom that would have changed your impression of the trust dynamic?

- I have to say, the nurse care and everybody was really nice to my mom. It wasn't that, but it's just like, at the end of the day, she's dumped on the street AMA, which she was noncompliant, that was probably gonna happen, but it's the system. In that case, I'm mad at the system. I thought everybody that cared for her did a perfectly wonderful job, but they have no power. None of those people have power. The doctors didn't have any power, the nurses didn't have any power, so why am I entrusting you when you have no power to protect anybody?

- Mmm.

- That's a hard question. And I never get a good answer when I ask.

- Well, that's 'cause we don't have a good answer, because our system is so backasswards that as agents of the system...

- Yet, doctors will stand in the middle of it and say, "Trust me, I'm a doctor."

- Right.

- It's like, are you, or are you like the guy that works at the DMV and I'm dealing with a nameless, faceless bureaucracy and you can't do anything to help me?

- Well, take a look at people who've actually stepped out of the bureaucratic matrix. So we were just at that conference in San Francisco. That was 200 odd docs. These are doctors who have stepped out of the insurance matrix, they're direct primary care doctors, they take a direct fee monthly from patients to take care of them, and they own that patient. Do you think they then, assuming they're acting in the best interest of the patient and are there for them 24/7, do they have the right to ask for your trust? Now, they're no longer necessarily agents of the system, but they have to shepard you through the same system.

- I wish we had something like that. Well, we did, it was called turn table health, but...

- Yeah, we did.

- It closed.

- We did, and why did they close? Because of thesystem pushed us back and believed in short term thinking and the legacy players couldn't wrap their head around the idea that patients were happy and caregivers were happy and outcomes were better, and they said, this isn't scalable and this is just a one off, and you're in a demilitarized zone in Downtown Vegas and yet, the stories from our patients and the stories from our actual care providers were transformative. So what the? And this is part of the mission of what we're trying to do, but the thing is, you, and look, here's the thing, you said it earlier, it's not like you're someone on Medicaid or someone on the fringes of society. Your father worked all his life as hard as anybody could to generate enough income to be okay, right? And even then, to get a bill for 100000 dollars, right?

- It pisses me off, 'cause it seems like people are stealing from him at the end of his life when he's not in a great position to defend himself.

- Think about what happens to our elders who have to spend all their savings down to get to Medicaid levels in order to get nursing home care or skilled nursing care, because there's no one to take care of them, because the family structure has dissolved in the US, we don't take care of our elders easily, because we're the sandwich generation, my generation. So again, it speaks to a huge systemic problem but that doesn't make it any more personal when it happens to you.

- Yeah.

- I mean, my dad called me this weekend and he's like, "I need to tell you what's gonna happen if I were to get sick or something, because we don't have the structures in place to pay for nursing home care and all that, so we need to talk about this stuff." And that's terrifying to me.

- Yeah. It's a cluster

- Yeah.

- Of epic proportions, but I gotta take specific issue with doctors who stand in the middle of it and say, "Follow me, I know the right way out." And then they lead you right into danger.

- I mean, I gotta say, there was a reason I left that system and it was because I couldn't sleep at night working in that system, but even then, it's not like I'm able to single handedly accomplish any change. I mean, I would ask you right now, what can I do to help? What can I do to help your mom and your dad right now?

- Nothing.

- There's nothing. I'm powerless and I'm a well-known, nationally known physician. I mean, I could go into the hospital and scream and yell. I could call up your dad's doctor and scream and yell. But do you think that's really gonna accomplish it? I could threaten to expose what they're doing publicly. We just did, by name. Is that a good thing? Probably not, because first of all, I don't know all the details.

- Right.

- And the truth is, it may have been that there was a structure that we're missing because patients are vulnerable and they're overwhelmed at the point of making these decisions. You said they kind of put the waiver in his face right as he's getting ready to get the infusion.

- Yeah, which should be illegal, straight up.

- Yeah, yeah.

- I mean, it's not good practice.

- It's not, but this is the thing about healthcare that makes it weird. We need, a lot of times, these services, and so in our vulnerable moment when we need it, we have no negotiating power, we have no leverage.

- But it's also like, come on, you don't know what the price is? You don't know what it is? You know what it is.

- You know what? You know what though?

- You obfuscated it on purpose.

- I'm gonna defend. I'm gonna make one defensive statement, and I'm gonna say many, many, many practitioners, doctors, nurse practitioners, et cetera who are doing this stuff have noidea what it cost.

-that. Read the tea leaves, be confident. Ask your patients after what it cost. You've done this procedure before, you should know what theit cost.

- I mean, maybe that's fair, but say I'm in a hospital. I have noidea what this stuff costs.

- Then don't say, don't open your mouth.

- Well, that's fair. You can't say it's gonna cost X and then have it cost Y, that's true, but I think being able to say, "I actually don't know." It's a complicated interplay between insurance, the hospital's charge master and all this, which isbullshit, by the way. The whole charge master opacity of prices is apoison, and they do it, because they can get away with it, because healthcare is not a capitalist game. It's not a free market, it's an oligopoly of a few big players all fixing the market, and the biggest player that fixes the market is Medicare, and do you know whofixes Medicare? The medical specialists who sit on the committee that determines reimbursements. And again, I'm gonna getfrom doctors and all that but the truth is...

- But you're not wrong. This is exactly like when Tyson and Conagra colluded for price fixing in the 90's, for the chicken market, except they're doing it on everyone's health.

- Which is, I'm starting to feel like...

- Congratulations, I hope you feel happy with yourself. I'm gonna end on this. Before I started working with ZDoggMD, before I started working with you, I was the kind of person who believed in the patriarchal 1.0 doctor patient relationship. I would have been obedient to the doctor, I would have done whatever they said, I would have viewed them as the authority, and I would have felt good, and I would have slept well at night knowing that, but now that I've been on the inside, I know way too much, and I don't trust any of you.

- You know, I wish I could say anything that would make that better, but I won't be able to today, but the truth is, we, Z Pack, are the ones who are gonna make that better by living all the principles that we talk about everyday, and not letting patients like Tom and his mom and his dad and our mothers and our fathers and our sisters down, and not letting the next generation of medical people down, because it's time that this changed. It's gone on long enough and that's all I have.

- We're out.

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