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Who's Actually in Charge? Navigating the Hospital Maze · The SH!T Sandwich Generation

• 0:04
  SPEAKER_01: One doctor says the procedure may happen today.
• 0:07
  SPEAKER_01: Another says the infection has to improve first.
• 0:10
  SPEAKER_01: A third team walks in and doesn't seem to know what the other two teams have told you.
• 0:15
  SPEAKER_01: Then everyone leaves, and you're still standing there wondering who's actually in charge.
• 0:22
  SPEAKER_00: Even as physicians, we struggle to follow mom's hospital plan.
• 0:25
  SPEAKER_00: And if we were confused, what happens to families who have never worked inside the medical system?
• 0:31
  SPEAKER_00: Welcome back to the shit sandwich generation.
• 0:34
  SPEAKER_00: I'm Mary Beth.
• 0:35
  SPEAKER_00: And I'm Susan.
• 0:36
  SPEAKER_00: Today we're talking about how to advocate for someone in the hospital when the plan keeps changing changing, communication breaks down, and the patient can't manage it alone.
• 0:48
  SPEAKER_01: Thanks, Mary.
• 0:49
  SPEAKER_01: So I'm going to do a little bit of a disclaimer on this episode because I think I'm going to be a little spicy in the sense of the way.
• 0:56
  SPEAKER_01: I think you are going to be a little spicy.
• 0:58
  SPEAKER_01: I want to be up front here and say when we talk about a lot of the things in this episode, I want to acknowledge that it's not because the hospital staff doesn't care.
• 1:09
  SPEAKER_01: Yeah.
• 1:09
  SPEAKER_01: It's not because the physicians don't care.
• 1:12
  SPEAKER_01: I just want to say it again.
• 1:13
  SPEAKER_01: It's not because they don't care.
• 1:15
  SPEAKER_01: Everybody is doing their very best.
• 1:18
  SPEAKER_01: It's because hospitals are a busy, complicated system.
• 1:23
  SPEAKER_00: So that's my disclaimer up front before we get spicy in the hospital.
• 1:26
  SPEAKER_00: 100%.
• 1:27
  SPEAKER_00: This is no, I think everybody that goes into the medical field that they are there because they care about the patients and want the best for the patients.
• 1:35
  SPEAKER_00: But let's face it, there's a lot in our medical system that is a little broken.
• 1:41
  SPEAKER_00: And it's not because the providers, the staff don't care.
• 1:46
  SPEAKER_00: It is busy and it's complicated.
• 1:48
  SPEAKER_00: And, you know, patients often, when they're in the hospital, it's confusing for them.
• 1:54
  SPEAKER_00: It's it's stressful.
• 1:56
  SPEAKER_00: They don't always, you know, remember every conversation, and some especially elderly patients.
• 2:02
  SPEAKER_00: They don't they're not gonna remember all the conversations.
• 2:04
  SPEAKER_00: They're not gonna understand which who's speaking to them and know what to ask.
• 2:11
  SPEAKER_00: And it's confusing.
• 2:13
  SPEAKER_00: It's and you're scared.
• 2:14
  SPEAKER_00: I mean, most of the time when you're a patient, you're scared.
• 2:17
  SPEAKER_00: Like absolutely, you're scared, and when you're scared, you you don't remember what to remember anything.
• 2:22
  SPEAKER_00: I can't even ask what I need to at my medical appointments, especially when something is not going right.
• 2:27
  SPEAKER_00: So it's it's hard.
• 2:29
  SPEAKER_00: And I think dad really tried, and we kind of prepped him every day to kind of dad, make sure you ask these questions if they round.
• 2:37
  SPEAKER_00: And he he got there early and he was actively listening.
• 2:42
  SPEAKER_00: Like I said, we gave him the questions to ask, but he also was, you know, scared.
• 2:48
  SPEAKER_00: You know, it's they again, they were married for over 50 years.
• 2:51
  SPEAKER_00: This is his his his wife.
• 2:54
  SPEAKER_00: He's exhausted.
• 2:55
  SPEAKER_00: This was a long process.
• 2:57
  SPEAKER_00: He's trying to process information about the the love of his life.
• 3:01
  SPEAKER_00: So being And thinking, is she gonna survive?
• 3:04
  SPEAKER_00: Is she gonna survive?
• 3:04
  SPEAKER_00: Which is even bigger.
• 3:06
  SPEAKER_00: So, you know, being there physically doesn't automatically mean someone can absorb and is able to relay all of the information that needs to be relayed to the family and to who needs to know.
• 3:20
  SPEAKER_00: Yeah.
• 3:21
  SPEAKER_00: So I think it's important one, you know, to have one family member kind of identified who can kind of hold the whole story and can ask the questions, especially when the patient is a little older, like our mom, what when when it's something major they're in the hospital with, right?
• 3:40
  SPEAKER_01: Yeah.
• 3:40
  SPEAKER_01: And I think the other thing, Mary, that that we forget is there are a lot of people that are going in and out of the hospital room.
• 3:47
  SPEAKER_01: Absolutely.
• 3:47
  SPEAKER_01: There is just a lot of activity in and out.
• 3:50
  SPEAKER_01: And so I really want to pause, especially for our listeners that are not part of the healthcare system and do maybe a little very basic level education.
• 4:00
  SPEAKER_01: Anyone that walks into the patient room should identify themselves, right?
• 4:05
  SPEAKER_01: They should say what their role is in the patient's care and they should say their name.
• 4:09
  SPEAKER_01: Absolutely.
• 4:10
  SPEAKER_00: Like mom, mom didn't, I mean, uh a a age, I think.
• 4:14
  SPEAKER_01: She could have thought the cleaner person was the attending.
• 4:18
  SPEAKER_01: For all mom knew, she would have been like, yep, they've been in my room today.
• 4:23
  SPEAKER_00: 100%.
• 4:23
  SPEAKER_00: And she probably did.
• 4:24
  SPEAKER_00: I mean, how does a patient know who's who's who?
• 4:27
  SPEAKER_00: It's very hard to tell nowadays.
• 4:30
  SPEAKER_00: So yeah, she probably thought, oh yeah, uh, it was a c it was a cleaner in there, but she really loved it.
• 4:35
  SPEAKER_00: Yeah, they were nice.
• 4:36
  SPEAKER_00: They said hi, they said everything was good, and uh walked out of the room.
• 4:40
  SPEAKER_00: Great, mom, that's great to hear, but that's not your doctor, right?
• 4:45
  SPEAKER_00: Or we didn't know if we weren't in the room, we didn't know it was a good one.
• 4:48
  SPEAKER_00: We didn't have a clue.
• 4:49
  SPEAKER_00: So yeah, I think it is.
• 4:50
  SPEAKER_00: And I and when I was there, I I I don't think most of the time when somebody walked in the room, obviously you knew if it was the cafeteria it was food, the cafeteria preparation they have a tray, but otherwise context clue.
• 5:04
  SPEAKER_00: Yeah, most people don't introduce themselves and you have not a clue who you're talking to and unless you ask, right?
• 5:13
  SPEAKER_00: And there's so many, again, like Susan said, there's so many people w walking in.
• 5:18
  SPEAKER_00: Obviously, the nurse always introduces themselves.
• 5:20
  SPEAKER_00: Usually they're very good.
• 5:22
  SPEAKER_00: They are, I will say, very nurses are very good about introducing themselves, letting you know that who they are, and often they're telling you a little bit about themselves.
• 5:32
  SPEAKER_00: So they'll take care of you today, you know.
• 5:34
  SPEAKER_00: So I will uh make a very very big shout out for nurses.
• 5:37
  SPEAKER_00: They do a great job of introducing themselves.
• 5:43
  SPEAKER_01: You know, I'm so and so, I'm a medical student, yeah, you know, I'm with such and such a team.
• 5:49
  SPEAKER_01: I do think uh we remember that.
• 5:51
  SPEAKER_01: And then uh especially at the teaching hospitals.
• 5:54
  SPEAKER_01: So at teaching hospitals, and mom was at a teaching hospital, which is great.
• 5:57
  SPEAKER_01: I'm a big proponent of teaching hospitals.
• 5:59
  SPEAKER_01: You know, you have medical students, you have interns, you have residents, you have fellows, you have and those are all learners still, right?
• 6:07
  SPEAKER_01: They're they're learners.
• 6:08
  SPEAKER_01: And I think that's an important part of the phone.
• 6:10
  SPEAKER_01: They're part of a bigger team, right?
• 6:12
  SPEAKER_01: So they're not the attending physician, they're under an attending physician, right?
• 6:16
  SPEAKER_01: So it is important that you know is that a medical student that's talking to you?
• 6:20
  SPEAKER_01: Because they're probably not gonna have the whole plan.
• 6:23
  SPEAKER_01: Uh right.
• 6:24
  SPEAKER_01: Absolutely.
• 6:24
  SPEAKER_01: And who are they reporting to?
• 6:26
  SPEAKER_01: So I think that's always a good question to ask.
• 6:28
  SPEAKER_01: Oh, your medical student so and so, what team are you on?
• 6:31
  SPEAKER_01: Hopefully they've told you and who they're reporting to.
• 6:35
  SPEAKER_01: And then there's also now a lot of nurse practitioners and physicians' assistants that can be sort of overseeing the team.
• 6:44
  SPEAKER_01: Right.
• 6:44
  SPEAKER_01: And then the attending physicians.
• 6:46
  SPEAKER_00: So in terms of the phone, but I think it's it's yeah, but I think there's a good point there as well.
• 6:50
  SPEAKER_00: And I often don't think, you know, again, not to say anything derogatory or negative.
• 6:57
  SPEAKER_00: And I think physicians are also not as good at at saying who they are, but often physician assistants, nurse practitioners don't say, Oh, I'm a physician assistant, I'm a nurse practitioner, I'm a physician.
• 7:09
  SPEAKER_00: Because there is a very big difference between the three.
• 7:14
  SPEAKER_00: And ultimately the physician has is overseeing all of this, right?
• 7:22
  SPEAKER_00: The physician is going to have a physician assistant or nurse practitioner kind of doing their some other rounding and reporting back to them.
• 7:30
  SPEAKER_00: Reporting back to them.
• 7:32
  SPEAKER_00: But again, different level of training than a physician.
• 7:35
  SPEAKER_00: So it's important to know who are you actually speaking to?
• 7:40
  SPEAKER_00: And do they have all of the information, or is the attending physician going to be coming around, right?
• 7:47
  SPEAKER_01: Right.
• 7:47
  SPEAKER_01: So I think you know, it's it's important to say, you know, what's your name if they haven't identified themselves?
• 7:52
  SPEAKER_01: What is your role?
• 7:53
  SPEAKER_01: What team are you on?
• 7:55
  SPEAKER_01: Mom had multiple different people.
• 7:57
  SPEAKER_01: She was seeing surgical oncology, she was seeing plastic surgery, she was seeing vascular surgery, she was seeing infectious disease.
• 8:04
  SPEAKER_01: She had multiple different teams.
• 8:06
  SPEAKER_01: So what team are you on?
• 8:08
  SPEAKER_01: Who's the attending physician?
• 8:10
  SPEAKER_01: And then I'd also even go a step further.
• 8:13
  SPEAKER_01: Like, who is going to tell me the plan for today?
• 8:16
  SPEAKER_00: Yes, right, right.
• 8:17
  SPEAKER_00: Exactly.
• 8:17
  SPEAKER_00: Are you are you the only one rounding for this team today, or is the physician going to come by?
• 8:22
  SPEAKER_00: Because that's there's a very that's very important to understand in and to know.
• 8:28
  SPEAKER_00: So yes, and don't don't be hesitant to ask.
• 8:32
  SPEAKER_00: It's it's an okay question.
• 8:34
  SPEAKER_00: You have the right as the patient and as a caregiver, and you don't have to be mean about it, but just say, who are you and what team?
• 8:42
  SPEAKER_00: And that's it.
• 8:43
  SPEAKER_00: And they should be happy to introduce themselves.
• 8:46
  SPEAKER_01: Right.
• 8:47
  SPEAKER_01: So I mean, I think it helps to have that information because often when you're in the hospital, you feel like you have no control.
• 8:55
  SPEAKER_01: Certainly as the patient, you feel that way.
• 8:57
  SPEAKER_01: I think as caregivers, you know, for the patient, we felt that way, even though we were healthcare providers ourselves.
• 9:04
  SPEAKER_01: But I do think just that little bit of knowledge helps you feel like more in control and have a little bit more empowered.
• 9:13
  SPEAKER_01: So I think these are really important questions.
• 9:16
  SPEAKER_01: And they honestly don't take that long.
• 9:19
  SPEAKER_01: No, I mean, it takes a minute to say, hi, I'm Dr.
• 9:23
  SPEAKER_01: Parisi.
• 9:24
  SPEAKER_01: Yeah, I'm an attending physician, I'm part of the OBGYN team.
• 9:28
  SPEAKER_01: Right.
• 9:28
  SPEAKER_01: Right?
• 9:29
  SPEAKER_00: It's I'll be making the decisions.
• 9:31
  SPEAKER_00: Well, luckily, I don't have to do any work in a hospital, it's not my favorite place to be.
• 9:36
  SPEAKER_00: But yeah, and it's also important to know, so you have all these teams, right?
• 9:41
  SPEAKER_00: And you you kind of want to know who who is actually making the ultimate decision, who's responsible, right?
• 9:49
  SPEAKER_01: Mary, can you talk a little bit about that?
• 9:51
  SPEAKER_01: Because I think that requires like a little bit of explanation, right?
• 9:55
  SPEAKER_01: Because again, we know mom was seeing multiple multiple multiple different physicians, but explain a little bit about what you mean when you say who's ultimately in charge, right?
• 10:06
  SPEAKER_01: Yeah.
• 10:07
  SPEAKER_00: So again, we had three cer is three surgeons in her surgery, right?
• 10:12
  SPEAKER_00: But and the so it's it may be a different person that's gonna be taking care of her when she's done with surgery.
• 10:20
  SPEAKER_00: The surgeon might still be rounding and checking the wound, but there might be somebody that is actually in charge of her overall care and who's gonna decide when she's gonna be discharged.
• 10:33
  SPEAKER_00: And that can be a little bit uh difficult to understand.
• 10:37
  SPEAKER_00: And you really just have to ask the question, honestly, who's actually in charge, who's responsible for the overall plan today?
• 10:47
  SPEAKER_00: Right.
• 10:47
  SPEAKER_00: Is it is it surgical oncology, or is it plasti the plastic surgeon who needs to take her back to surgery?
• 10:54
  SPEAKER_00: And I think that's where we got a little and very confused.
• 10:59
  SPEAKER_00: Um, and and we're we're physicians, right?
• 11:01
  SPEAKER_00: We probably should have asked sooner because it was very confusing.
• 11:07
  SPEAKER_00: So, you know, uh know who's r actually responsible for the overall plan.
• 11:11
  SPEAKER_00: And I I think the next thing that is really useful to kind of ask uh daily because plans change, things change, but the the the the teams are still rounding every day unless they've signed off.
• 11:25
  SPEAKER_00: Like infectious disease just came in, did what they were doing for a couple days.
• 11:30
  SPEAKER_00: A consultation basically.
• 11:31
  SPEAKER_00: So they weren't there, but the other teams were still rounding.
• 11:34
  SPEAKER_00: So what's the plan for today?
• 11:36
  SPEAKER_00: What what are you kind of waiting for?
• 11:39
  SPEAKER_01: What you know what are we gonna are there any gonna be any tests that are ordered today?
• 11:44
  SPEAKER_01: Is there going to be any physical therapy today?
• 11:47
  SPEAKER_01: You know, those are you know I mean maybe you don't know to ask those questions, but what's gonna happen today?
• 11:52
  SPEAKER_01: What's gonna happen today?
• 11:53
  SPEAKER_00: What's the plan for today?
• 11:54
  SPEAKER_00: What what's gonna happen today?
• 11:56
  SPEAKER_00: Are there any tests that are gonna be done?
• 11:58
  SPEAKER_00: Are there any what are we waiting for?
• 12:01
  SPEAKER_00: You know, what what is what are we waiting for today?
• 12:03
  SPEAKER_00: And obviously, you know, what needs to happen before discharge to be discharged?
• 12:09
  SPEAKER_01: Yeah.
• 12:09
  SPEAKER_01: I mean, I think one of the things that just backing it up is that, and we we will talk about this probably not today, but is discharge planning, right?
• 12:18
  SPEAKER_01: And I think we've talked about that in earlier episodes, but really it's such an enormous thing that it is okay to say, do we know what day she's going to be discharged?
• 12:28
  SPEAKER_01: Do you have a feeling for what day she might be discharged?
• 12:30
  SPEAKER_01: The the answer may be no.
• 12:32
  SPEAKER_01: We just really don't know.
• 12:34
  SPEAKER_01: But I think a lot of times there's that assumption that, you know, we'll we'll find out and then we'll go home and everything will be fine.
• 12:42
  SPEAKER_01: But there's a lot that goes into destruction.
• 12:43
  SPEAKER_00: And which again, which team is making that decision?
• 12:47
  SPEAKER_00: And, you know, again, I mean, mom asked everyone when she was going home.
• 12:53
  SPEAKER_00: Every single team, including the Quinn in person.
• 12:55
  SPEAKER_00: Exactly.
• 12:55
  SPEAKER_00: She probably did.
• 12:56
  SPEAKER_00: And not not to not not to anyways, moving on.
• 13:01
  SPEAKER_00: And you know, again, no, I lost my train of thought on that one.
• 13:05
  SPEAKER_00: No There's no harm in it.
• 13:07
  SPEAKER_00: Exactly.
• 13:08
  SPEAKER_00: And and no one, you can ask them when they're rounding, because that's also important.
• 13:13
  SPEAKER_00: When are when do you plan on rounding?
• 13:15
  SPEAKER_00: Are you rounding in the afternoon?
• 13:16
  SPEAKER_00: Are you rounding in the morning?
• 13:18
  SPEAKER_00: They should be able to tell you.
• 13:20
  SPEAKER_00: And again, everything tends to kind of blur in a hospital.
• 13:24
  SPEAKER_00: We talked about this last episode.
• 13:26
  SPEAKER_00: You know, hospital time is different, you hear different things, the plan changes.
• 13:31
  SPEAKER_00: Don't rely on just your memory.
• 13:35
  SPEAKER_00: Keep a notebook, bedside, bedside, so that you can put everything in that notebook.
• 13:42
  SPEAKER_00: And more to come on that from us.
• 13:44
  SPEAKER_00: We're gonna help you with that, but you know, know the names and roles of who's in charge in in the process of taking care of your loved one.
• 13:53
  SPEAKER_00: What's the plan, the procedures, and the test results, questions that still need answers, what's happening before the patient can leave?
• 14:01
  SPEAKER_00: Who in the family, who's who's going to talk to the to the physician?
• 14:06
  SPEAKER_00: Again, designate one family member.
• 14:08
  SPEAKER_00: Did I miss anything on that?
• 14:09
  SPEAKER_01: No, I think I think I think that's really what we would recommend.
• 14:13
  SPEAKER_01: I mean, the notebook at the bedside I think is really important.
• 14:16
  SPEAKER_01: And again, dad took a lot of notes.
• 14:18
  SPEAKER_01: I took notes, she took notes, but they were all in separate places.
• 14:21
  SPEAKER_01: So I think if if we had that by the bedside, it would have been really helpful.
• 14:25
  SPEAKER_01: And then whoever was there at the time could could just jot that note.
• 14:29
  SPEAKER_00: Again, more coming from us on that.
• 14:30
  SPEAKER_00: But and and the goal is not to control everything here, it's just to reduce confusion all around, right?
• 14:36
  SPEAKER_00: For the patient, for the caregivers, probably even for the the the physicians as well.
• 14:42
  SPEAKER_01: Right.
• 14:42
  SPEAKER_01: I mean, I think sometimes there were times that my Mary, yeah, I think we were both there when we'd be like, no, the last person that came in said the wound vact was supposed to stay on.
• 14:53
  SPEAKER_01: So more to come on the wound vact.
• 14:55
  SPEAKER_01: But, you know, again, I think we become advocates as caregivers as well.
• 15:00
  SPEAKER_01: And I think that's really important, right?
• 15:02
  SPEAKER_01: We're we're not running the show.
• 15:03
  SPEAKER_01: No, we're not calling the medical shots, but it is really important.
• 15:07
  SPEAKER_01: And one of the things that I think about, Mary, is there are three things I think about.
• 15:12
  SPEAKER_01: One, discharge planning, two was the wound care, and three was the DVT, which is a deep.
• 15:17
  SPEAKER_00: I was just gonna say we're we're not definitely not in charge, but you do want to, if things aren't happening as you think they should, you definitely, and I say this to my patients as well, you have to advocate for the your that your loved one, or if it's you yourself.
• 15:35
  SPEAKER_00: So, you know, if you think something basic is missing, sometimes we do, we're focusing on, okay, we've got this wound, what are we gonna do?
• 15:45
  SPEAKER_00: It looks infected.
• 15:46
  SPEAKER_00: I mean, sometimes we're focused, you know, can what does the patient have, you know, uh the the major things, but don't forget the basics.
• 15:53
  SPEAKER_00: Has the patient got has your loved one got out of bed?
• 15:57
  SPEAKER_00: Has physical therapy came?
• 15:59
  SPEAKER_00: Are they eating and drinking?
• 16:00
  SPEAKER_00: Are they hydrating?
• 16:01
  SPEAKER_00: Which again, nurses are pretty good at at tracking all of these things.
• 16:05
  SPEAKER_00: But if something seems off to you, Susan.
• 16:10
  SPEAKER_01: Yeah.
• 16:11
  SPEAKER_01: So I mean, I okay, this is where I get a little spicy, but and and you know, again, I think I could have done this better, Mary.
• 16:17
  SPEAKER_01: And I'm not quite sure why I didn't, even as a physician.
• 16:21
  SPEAKER_01: So, you know, mom was in bed a very long period of time.
• 16:25
  SPEAKER_01: For the beginning, she was she's older, you know, she doesn't have great venous return.
• 16:31
  SPEAKER_01: And she had just had surgery.
• 16:33
  SPEAKER_01: She just had surgery.
• 16:34
  SPEAKER_01: I and she'd already had one surgery, so she'd been in bed for a while.
• 16:37
  SPEAKER_01: So one of the things I asked was, what are we gonna do to make sure she doesn't get a blood clot?
• 16:41
  SPEAKER_01: Right, yeah.
• 16:42
  SPEAKER_01: From the very start, I was like, is she gonna have on the compression stockings?
• 16:49
  SPEAKER_01: You know, is she gonna have the venodynes on?
• 16:52
  SPEAKER_01: Is she gonna have something to prevent the blood clots, right?
• 16:55
  SPEAKER_01: Yeah.
• 16:55
  SPEAKER_01: Um, so I did ask, and I was told yes.
• 16:58
  SPEAKER_00: Yeah, and I think you told me to ask the following day, and I think I did.
• 17:02
  SPEAKER_00: They still weren't on.
• 17:03
  SPEAKER_00: Right.
• 17:03
  SPEAKER_01: And then, you know, so we can we kept asking, and I think at one point they do show up, and I think they're sitting there by the bedside.
• 17:12
  SPEAKER_01: Right?
• 17:12
  SPEAKER_01: So they're sitting there at the bedside, and you know, so basically what they're designed to do is, you know, do the compression of the legs to move the blood back up for the people that are not in the medical profession.
• 17:23
  SPEAKER_01: And that's really important because if the blood isn't circulating, it can develop clots, which is not a good thing because they can break off and go to the heart or the lungs or the brain.
• 17:32
  SPEAKER_01: That's not a good thing.
• 17:33
  SPEAKER_01: And, you know, it is a risk for anybody that's laying in bed for a long time and has had surgery.
• 17:39
  SPEAKER_01: So we knew that.
• 17:40
  SPEAKER_01: We asked, we asked again, we saw them sitting there, and I can't remember if they were actually ever on.
• 17:51
  SPEAKER_00: I honestly don't think they were until she got she got a clot, and then so she eventually got a clot, had to be put on a different uh medication because of the clot, had to get extra tests.
• 18:02
  SPEAKER_00: So this is again one of those.
• 18:05
  SPEAKER_00: I mean, we we want to prevent this is a medical mystery.
• 18:08
  SPEAKER_00: Why can't these simple things happen?
• 18:10
  SPEAKER_00: But again, hospitals are busy, there's a lot going on, but uh This is if you see something, say something.
• 18:17
  SPEAKER_00: Yeah, yes.
• 18:18
  SPEAKER_00: Right?
• 18:18
  SPEAKER_00: If you see something, say something.
• 18:20
  SPEAKER_00: It's okay, right?
• 18:21
  SPEAKER_00: It's the same thing in the medical field.
• 18:23
  SPEAKER_00: If you see something, say say something.
• 18:25
  SPEAKER_01: And don't be afraid that, you know, just because you're not a c a clinician doesn't mean I mean use your if you're using your common sense.
• 18:32
  SPEAKER_01: Say it nicely.
• 18:32
  SPEAKER_00: Say it nicely.
• 18:33
  SPEAKER_00: Don't, you know, again, and and you know, just say it nicely and and respectfully.
• 18:38
  SPEAKER_00: Respectfully.
• 18:39
  SPEAKER_00: And yeah, unfortunately, an order in the chart doesn't always get to the bedside, and that is some what some of the flaws of our system.
• 18:48
  SPEAKER_00: And you know, again, it's not because the people don't care.
• 18:53
  SPEAKER_00: It's just places are busy, things sometimes get overlooked.
• 18:56
  SPEAKER_00: It can there's complicated systems.
• 18:59
  SPEAKER_00: Be respectful, but if you see something, say something.
• 19:02
  SPEAKER_01: Yeah, I mean, it's okay to be like, hey, I know, you know, a little more forcefully than that.
• 19:07
  SPEAKER_01: And again, I know everyone is busy, but we're you know, we're getting different information, or we notice that the compression stockings aren't on.
• 19:17
  SPEAKER_01: You know, be an advocate.
• 19:19
  SPEAKER_01: It's okay.
• 19:20
  SPEAKER_01: And in the end, you might save your loved one from being on another medication or actually having another complication.
• 19:27
  SPEAKER_01: I think the other thing, Mary, that funny and not so funny, I mean, at times it became almost ridiculous was, I mean, we've talked about mom had an infection, and part of the whole length of her um stay was she had an infection, it needed to be cleared up before her wound could be closed, which was very important.
• 19:48
  SPEAKER_01: So part of it was we've got to clear up this infection.
• 19:51
  SPEAKER_01: It's a pretty big open wound, and one of the strategies to clear up a wound infection is to have a wound vac on.
• 20:02
  SPEAKER_01: And I think I lost a lot of hair because I pulled a lot of hair out over this one.
• 20:08
  SPEAKER_01: There were days where one team would come in the morning and say, We're gonna put the wound vac on, the wound vac would go on, and then two hours later, somebody else would come in and say, No, we're not going to do the wound vac and the wound vac would come off.
• 20:24
  SPEAKER_01: And so on and so forth and so on and so forth.
• 20:28
  SPEAKER_01: It felt like for days.
• 20:30
  SPEAKER_00: It was it was a few because it was over the weekend.
• 20:32
  SPEAKER_00: I remember, I remember this, and it was like, okay, are we keeping the wound back on or are we taking it off?
• 20:38
  SPEAKER_00: And why is it on if it's not doing anything?
• 20:42
  SPEAKER_00: And then, oh, it looks like it's making it worse, but we're gonna leave it on.
• 20:47
  SPEAKER_00: I mean, it was just it was again, uh I just boggled, boggled my mind.
• 20:54
  SPEAKER_00: So talking about medical mysteries, talking about mazes.
• 20:57
  SPEAKER_00: And and again, that was the whole infectious thing.
• 20:59
  SPEAKER_00: Again, not not disrespect here.
• 21:02
  SPEAKER_00: Why didn't you do a culture in the the a bacterial culture in the OR?
• 21:07
  SPEAKER_00: Why haven't we gotten?
• 21:08
  SPEAKER_00: And we did ask to see infectious disease questions.
• 21:11
  SPEAKER_00: We said, Well, can we get infectious disease involved in this?
• 21:14
  SPEAKER_00: So do again be respectful.
• 21:17
  SPEAKER_00: Didn't ask about the culture, or I think we did.
• 21:19
  SPEAKER_00: You did.
• 21:19
  SPEAKER_00: We did.
• 21:20
  SPEAKER_00: I did right in the beginning.
• 21:21
  SPEAKER_00: Yes.
• 21:21
  SPEAKER_00: I did right when they were coming out of the OR.
• 21:23
  SPEAKER_00: You're right.
• 21:24
  SPEAKER_00: We did, we did, and still don't agree with the answer, but okay.
• 21:28
  SPEAKER_00: But yeah, it was on again, off again, on again, and then finally off.
• 21:33
  SPEAKER_00: And and unfortunately, it will and not uh I don't think they knew how to She had a very complex wound, I think, is is one of the problems.
• 21:43
  SPEAKER_01: Yeah.
• 21:43
  SPEAKER_01: Right.
• 21:44
  SPEAKER_01: Which so again, sometimes in medicine, things don't always a lot of times in medicine, things don't always go according to the textbook.
• 21:53
  SPEAKER_01: And so we have to make the best decision possible for the patient, but this really Bordered on almost the ridiculous, I have to say.
• 22:03
  SPEAKER_01: And poor mom, right?
• 22:05
  SPEAKER_01: Like, because this was going on and off and on and off.
• 22:07
  SPEAKER_01: And you know, this was in a very sensitive area.
• 22:11
  SPEAKER_01: So not to belaborate, but I think Mary and I, as physicians, feel like we could have been better advocates and asked more.
• 22:20
  SPEAKER_00: Yeah.
• 22:20
  SPEAKER_00: And I think there was a lot of confusion.
• 22:22
  SPEAKER_00: I think one team felt that one thing should be done, another team felt like an uh another thing should be done.
• 22:30
  SPEAKER_00: And I think there was a little bit of a of a conflict there in who was really in charge.
• 22:35
  SPEAKER_00: And I think just saying, well, who is in charge would have been.
• 22:40
  SPEAKER_01: Asking for a team meeting.
• 22:41
  SPEAKER_01: I think that's one of the things that maybe we could have done is say, we'd really like to have, you know, a family meeting with the teams.
• 22:49
  SPEAKER_01: Now, whether or not that would have happened is another story, but I do think there was a place to say that.
• 22:53
  SPEAKER_00: I I think a team meeting would have been probably appropriate.
• 22:56
  SPEAKER_00: I think at one point, because we were so, you know, there was so much back and forth, and what are we doing and not going home?
• 23:04
  SPEAKER_00: That finally I did and the not seeing one not seeing the plastic surgeon in particular in rounding that I eventually got a little frustrated.
• 23:16
  SPEAKER_00: And I think it was his physician, I can't remember, physician assistant rounding.
• 23:20
  SPEAKER_00: I don't think we ever saw him.
• 23:21
  SPEAKER_00: And I'm like, I I really need to talk to the physician.
• 23:25
  SPEAKER_00: So can can I have his number or is he gonna round?
• 23:28
  SPEAKER_00: And finally, I got him on the phone because I needed to know, you know, what is the plan here and what are we waiting for?
• 23:34
  SPEAKER_00: And are you going to bring her back to the OR?
• 23:36
  SPEAKER_00: And if you don't bring her back to the OR, what's gonna happen?
• 23:40
  SPEAKER_00: So it was a lot of advocating.
• 23:42
  SPEAKER_00: And thankfully, you know, again, as a physician, I felt comfortable doing that.
• 23:46
  SPEAKER_00: But, you know, so don't, you know, ask, ask the questions.
• 23:51
  SPEAKER_00: But yeah, had to get them on the phone and say, look, I need some answers.
• 23:55
  SPEAKER_00: We're not getting the answers in the hospital because I'm not seeing you.
• 23:58
  SPEAKER_00: Right.
• 23:59
  SPEAKER_00: And so it's important, you know, ask, ask the the questions, and if you still can't get that answer, request uh a team meeting or request to speak to the attending physician.
• 24:13
  SPEAKER_01: And there are patient advocates in the hospital as well.
• 24:17
  SPEAKER_01: That's important.
• 24:17
  SPEAKER_01: Hospitals have a patient advocacy department.
• 24:21
  SPEAKER_01: So if you really feel like you need the help, again, Mary and I are physicians, so a little bit easier for us, but it is important to know that there are departments in place to help other help people through this.
• 24:35
  SPEAKER_01: So you're not alone, you know.
• 24:37
  SPEAKER_00: And I I think you know, part of uh doing this this podcast is we are getting some resources together for caregivers to know what to ask and how how to ask and what's kind of what you should ask, right?
• 24:52
  SPEAKER_00: Because it is i important.
• 24:53
  SPEAKER_01: And I think And it's hard to remember when you're going through it, yes, right?
• 24:57
  SPEAKER_01: You're exhausted, you're tired, mom is in the background going, I want to leave, I want to leave, I want to leave, I want to come.
• 25:03
  SPEAKER_00: I want to get home for Easter, I want to get home for Easter, I want to be home, and I go home.
• 25:07
  SPEAKER_00: And and she really was persistent and and so persistent that she did, I think, ask everybody that walked through that door, when am I going home?
• 25:15
  SPEAKER_00: Right.
• 25:15
  SPEAKER_01: So I it that can be distracting too, is my point, right?
• 25:18
  SPEAKER_01: Like, yes, you're compassionate, you're you're empathetic, you want to be there, but that kind of wears you down too.
• 25:25
  SPEAKER_01: And you're like, listen, mom, please let me just try to to work through this to help you so we can get you home.
• 25:32
  SPEAKER_01: But again, I think having some of the resources that we're gonna put into place to help our caregivers and give prompts and reminders is important.
• 25:41
  SPEAKER_00: It absolutely absolutely.
• 25:42
  SPEAKER_00: And, you know, and and again, that was important to her, and you want to know what is important to your your loved one.
• 25:48
  SPEAKER_00: And we were trying to keep her, you know, we didn't want to say, yeah, mom, you're not going home anytime soon.
• 25:54
  SPEAKER_00: You know, you want to keep their hope up because mindset is sometimes half the battle in overcoming some diseases and overcoming heal and and healing appropriate.
• 26:04
  SPEAKER_00: So it having hope and having a positive mindset.
• 26:08
  SPEAKER_00: I'm not saying lie to your loved ones, but you do want to keep their hope up and keep them kind of something to look forward to and something makes a difference.
• 26:17
  SPEAKER_00: Absolutely, it does.
• 26:18
  SPEAKER_00: Again, I'm really into mind, mind, body, and context, and how much your mind really controls your body, and it does make a huge difference.
• 26:26
  SPEAKER_00: But I think one thing, you know, I think that I I think consistently needed to ask every day was, you know, what is the plan today?
• 26:38
  SPEAKER_00: What are we waiting for?
• 26:40
  SPEAKER_00: And what must happen next?
• 26:43
  SPEAKER_00: I think those are probably through kind of the bedside check questions, I would say.
• 26:49
  SPEAKER_01: I would add one more when discharge starts to be be discussed, and that's what will we need to manage when we get home?
• 26:56
  SPEAKER_00: Yeah.
• 26:57
  SPEAKER_01: Because don't assume that everything's going to magically fall into place, right?
• 27:02
  SPEAKER_01: Absolutely.
• 27:03
  SPEAKER_01: Because remember, you're going from a hospital situation where there are many hands to help the patients to at home where it is is you.
• 27:12
  SPEAKER_01: Yeah, because discharge planning.
• 27:14
  SPEAKER_01: Discharge is not simply leaving the hospital, it's transferring the responsibility from the hospital team to the patient in the family.
• 27:21
  SPEAKER_00: Yeah, that's I think important, important to realize.
• 27:24
  SPEAKER_00: I mean, yes, the hospital is has become your home, and yes, it's stressful, and yes, there's a lot going on, but there is a lot of good right there, right?
• 27:34
  SPEAKER_00: You have people 24-7 caring for your loved one.
• 27:38
  SPEAKER_00: You have meals coming to that loved your loved one, you have support, someone getting them out of bed, taking them to the bathroom if they need to, changing their changing, changing their life.
• 27:50
  SPEAKER_00: Yes, cleaning them up, right?
• 27:52
  SPEAKER_00: That's a lot, that's a lot of work, right?
• 27:56
  SPEAKER_00: And you don't honestly realize how much the nurses are are really doing until you get them in a yeah, and they aids, yeah, and they aids not uh and the staff is doing to help your loved one, and then you have to, you as the caregiver or the family have to do all of that at home.
• 28:17
  SPEAKER_01: We don't mean to bring anyone down here, but yes.
• 28:20
  SPEAKER_01: Uh but but and planning is important, is is basically yeah, asking questions and planning is important.
• 28:26
  SPEAKER_00: And right now there is a lot of of discharge paperwork there to, you know, you know, let you know what.
• 28:33
  SPEAKER_00: But a lot of it, again, doesn't focus on the back side of that.
• 28:38
  SPEAKER_00: What is the caregiver gonna need to do?
• 28:40
  SPEAKER_00: And does the caregiver have the resources and the ability to do it?
• 28:45
  SPEAKER_00: And the ability to do it.
• 28:47
  SPEAKER_01: And you know, lifting mom.
• 28:49
  SPEAKER_01: I mean, he could do it, but putting her in the shower, it's not an easy thing for him.
• 28:55
  SPEAKER_01: So I mean, not an easy thing for us.
• 28:58
  SPEAKER_00: So it's important to do your caregiver check before you leave the hospital.
• 29:02
  SPEAKER_00: And I think, you know, we're gonna we're gonna get into some of this, but really important to do a caregiver check before you you you leave the hospital, even though you have discharge check instructions and it the nurses have checked off the boxes and social work and all, and we're we'll get more into that, but do a caregiver check, right?
• 29:23
  SPEAKER_00: Absolutely, absolutely.
• 29:25
  SPEAKER_00: It's everything is it it's very our health care is complicated, discharge is complicated, and getting a your loved one home and taking care of them at home is common.
• 29:37
  SPEAKER_01: I think the other thing is when you're at a big medical center that's we were a distant distance from our home, right?
• 29:43
  SPEAKER_01: And so some of the resources that are available in a big city or immediately available weren't necessarily available where we were living or weren't necessarily the same thing.
• 29:55
  SPEAKER_01: So it it was a little bit different and a little more challenging.
• 29:59
  SPEAKER_01: So, really things to think about you part of doing this podcast is to help others to navigate this hospital maze.
• 30:08
  SPEAKER_00: It sure is a hospital maze.
• 30:10
  SPEAKER_00: Uh, you shouldn't need a medical degree to understand what is happening to someone you love, but our healthcare system is complicated.
• 30:18
  SPEAKER_00: And even good care can become fragmented when several teams are involved.
• 30:24
  SPEAKER_00: Right.
• 30:24
  SPEAKER_01: So I really want to emphasize that, Mary, what you just said.
• 30:29
  SPEAKER_01: Even good care.
• 30:30
  SPEAKER_01: And I I think that's the thing.
• 30:32
  SPEAKER_01: I mean, she had good care.
• 30:34
  SPEAKER_01: Even good care can become fragmented.
• 30:36
  SPEAKER_01: Yeah.
• 30:36
  SPEAKER_01: That's what we have to remember.
• 30:38
  SPEAKER_01: Absolutely.
• 30:38
  SPEAKER_01: Absolutely.
• 30:39
  SPEAKER_01: That's why, you know, it's important, write things down like we talked about, identify the person leading the plan, ask the same questions every day.
• 30:47
  SPEAKER_01: You know, follow up when something's not happening.
• 30:50
  SPEAKER_01: See something, say something, and be an advocate.
• 30:53
  SPEAKER_01: Yeah.
• 30:53
  SPEAKER_01: And if the answers still don't make sense, keep asking and then, you know, ask for maybe a meeting or an advocate to help you.
• 31:02
  SPEAKER_00: So and again, advocacy doesn't mean that you're being difficult and you don't have to be disrespectful, but you're not being dis difficult, right?
• 31:12
  SPEAKER_00: If you're you're you're just making sure that uh things aren't getting lost between teams, there are shifts going on, there's procedures, there's handoffs.
• 31:23
  SPEAKER_00: So you just want to make sure that you are advocating for the one that you love.
• 31:27
  SPEAKER_00: And yes, you're not being difficult, you're not being disrespectful respectful, you're just making sure that your loved one is getting what they need, and you know, that's that's it.
• 31:39
  SPEAKER_01: Yeah.
• 31:39
  SPEAKER_01: So, you know, again, not to um to drive home the point, belabor this.
• 31:46
  SPEAKER_01: But before you be leave the bedside, know three things.
• 31:48
  SPEAKER_01: You know, what's happening today?
• 31:50
  SPEAKER_01: What are we waiting for?
• 31:52
  SPEAKER_01: Uh, what's happening next?
• 31:53
  SPEAKER_01: And, you know, what is our estimate of discharge?
• 31:57
  SPEAKER_00: It's estimate.
• 31:57
  SPEAKER_00: You don't need an exact day, but what is that?
• 31:59
  SPEAKER_00: The estimate is a good thing.
• 32:00
  SPEAKER_00: What are we looking at here?
• 32:01
  SPEAKER_01: So we can start some planning.
• 32:03
  SPEAKER_00: And mom, yeah, she would anybody that walked in, what day am I am I going home?
• 32:08
  SPEAKER_00: What day am I going home?
• 32:10
  SPEAKER_00: And the question is, does she ever get home?
• 32:14
  SPEAKER_01: Yeah.
• 32:14
  SPEAKER_01: So thanks for listening to the shit sandwich generation.
• 32:18
  SPEAKER_01: If today's episode made you laugh, cry, or just feel more seen, share it with someone who's who's going through this.
• 32:25
  SPEAKER_01: Subscribe, leave a review, let us know your own sandwich generation stories at Meribeth P6.
• 32:32
  SPEAKER_01: And until next time, remember, you're not alone and you're doing better than you think, and you really don't have to eat the shit sandwich.