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Communication and the Cost of Silence · Holding It Together (Kinda)

• 1:18
  SPEAKER_00: Hello, everybody.
• 1:20
  SPEAKER_00: For this episode of Holding It Together kinda, we're tackling the specific nightmare that families face when they're navigating severe mental illness.
• 1:29
  SPEAKER_00: One of the significant nightmares.
• 1:32
  SPEAKER_00: I'm your host, Michael Macniak.
• 1:35
  SPEAKER_00: When a patient, client, family member has a condition like a schizophrenia or bipolar disorder, communication isn't just good medicine and good practice.
• 1:49
  SPEAKER_00: Sometimes it's really a survival requirement.
• 1:53
  SPEAKER_00: We're gonna talk about David.
• 1:55
  SPEAKER_00: David's a 62-year-old man living with schizophrenia, and he's finally stable on a very complex antipsychotic regimen, which is managed by a psychiatrist.
• 2:09
  SPEAKER_00: But he he develops a severe respiratory infection and he goes and visits an urgent care clinic.
• 2:18
  SPEAKER_00: So the doctor there, he sees that David is agitated and upset, which is obviously a symptom of his mental illness.
• 2:27
  SPEAKER_00: The doctor prescribes him a sedative, a potent sedative, and it has bad effects because the doctor didn't really check the side effects and how it may interact with David's um psychiatric meds.
• 2:45
  SPEAKER_00: So David's mother comes in and she's, you know, she's managing his daily, his daily meds.
• 2:50
  SPEAKER_00: She's trying to get a hold of this doctor, and she's saying, you know, he's already on this this medication.
• 2:55
  SPEAKER_00: You can't give him that medication.
• 2:57
  SPEAKER_00: And the doctor basically just holds up his hand and says, I'm sorry, David's an adult, you're not his conservator or his guardian.
• 3:06
  SPEAKER_00: He he needs to sign this release or sign a specific waiver for me to be able to talk to you.
• 3:12
  SPEAKER_00: Um, and since he's in a state of paranoia, you know, because of his mental illness, he refuses to sign anything.
• 3:20
  SPEAKER_00: So the doctor more or less doesn't want to talk to mom, doesn't understand that David is um incapable of talking about the medications that he's on and the ramifications thereof.
• 3:33
  SPEAKER_00: And um, you know, this is uh flies in the face of what we know about electronic medications and and that cross pollination, if you will, from different um hospitals and and different medical providers.
• 3:49
  SPEAKER_00: But basically, we're gonna talk talk about stuff here that hits home for a lot of you who feel like you're you're screaming into a void, you're trying to save someone, you know, you're trying to save your loved one's life.
• 4:06
  SPEAKER_00: And and communication doesn't just become a buzzword.
• 4:09
  SPEAKER_00: It's it's really the the difference between a stable life and a and a preventable tragedy.
• 4:15
  SPEAKER_00: Because in this scenario, David, you know, he was caught between a psychiatrist managing a psychosis, you got his doctor uh who's trying to respond to an acute uh moment of medical need, and they didn't speak.
• 4:32
  SPEAKER_00: And this combination of medications wound up turning lethal for David.
• 4:39
  SPEAKER_00: And they were just, you know, were they arguably are they are they uh barred from uh discussing these things collectively because of their professional ethics, because of HIPAA, because of other privacy laws.
• 4:57
  SPEAKER_00: Well, you know, three days after this conversation with the mom and the and the doctor, David dies in his sleep from respiratory failure.
• 5:07
  SPEAKER_00: Welcome back.
• 5:08
  SPEAKER_00: Everybody is here with us today.
• 5:10
  SPEAKER_00: We got all four of our family members here on board.
• 5:13
  SPEAKER_00: Sarah, Muriel, Angela, Stephanie are all here.
• 5:17
  SPEAKER_00: Happy to have everybody back again.
• 5:20
  SPEAKER_00: I want to jump right into our case this week, where we jump, we're gonna jump right over to our our frontline segment where theory ends and reality hits.
• 5:30
  SPEAKER_00: It's that two o'clock in the morning phone call, it's the hospital waiting room coffee that we all hate, it's the absolute exhaustion of trying to save someone you love while the world keeps on turning and going on without you.
• 5:43
  SPEAKER_00: This is what it looks like when a family becomes the only thing that stands between a crisis and a catastrophe.
• 5:52
  SPEAKER_00: We're talking about our friend David, who we discussed was prescribed contraindicated medications that wound up unfortunately causing his death.
• 6:04
  SPEAKER_00: One of the things that we need to talk about here on this frontline segment is this unreliable historian concept.
• 6:12
  SPEAKER_00: Because even in the introduction, you know, we had David going to a clinic to get urgent care because he he was having a medical emergency.
• 6:23
  SPEAKER_00: And he didn't necessarily walk in there and tell his doctor that he has a conservator.
• 6:28
  SPEAKER_00: He didn't walk in there and tell the doctor that he has a severe and persistent mental illness or that he's on such and such medications.
• 6:36
  SPEAKER_00: So and this is a problem that that many of us face in our in our professional lives, because these folks that we're working with, guys, are are not typically the best historians.
• 6:49
  SPEAKER_00: And that's why I say it's so valuable to have families involved and stay involved and and keep pushing and promoting and advocating because very often mental illness and just the very nature of the mental illness precludes somebody from being a good historian.
• 7:11
  SPEAKER_00: There's a a I don't know how to describe it.
• 7:15
  SPEAKER_00: There's there's something called, and I can't even pronounce it right, anasognosia.
• 7:20
  SPEAKER_00: And and do you know what I'm talking about?
• 7:24
  SPEAKER_00: Anyway, A-N-O-S-O-G-N-O-S-I-A.
• 7:28
  SPEAKER_00: Basically, what it means is that people are very often in denial of their mental illness.
• 7:34
  SPEAKER_00: So not only do people not go in and talk about it because they are scattered or disjointed, but also sometimes people just don't want to acknowledge it and they do not talk about it.
• 7:48
  SPEAKER_00: So what we what we encourage obviously is involvement of the family as a 24-7 historian, uh air traffic controller about what's been going on with a with a family member, not just cutting it into these 15-minute segments or these acute moments of of when the doctor is actually seeing them.
• 8:14
  SPEAKER_00: And you know, we've all seen this, we've all been part of it, and and this is again why I keep saying that the idea of communication is as simple and as silly as it sounds, may be the core foundation to everything that we do, not only in our profession, but in all the professions that deal with folks with mental illness.
• 8:38
  SPEAKER_00: So do you have any thoughts, Angela?
• 8:41
  SPEAKER_04: I have lots of thoughts around communication and family members being invested and being listened to.
• 8:47
  SPEAKER_04: I think sometimes the story gets in the way of important information and people don't give them the time to at least get the story out so that they can get the information.
• 8:58
  SPEAKER_04: And then I also think it's really important that that information does get out and how can they get it there?
• 9:05
  SPEAKER_04: You know, sometimes they think they just go to the social worker and it's good enough.
• 9:08
  SPEAKER_04: They pass it along or they sent in their own paperwork from a last admission, but it never gets to the right people.
• 9:14
  SPEAKER_04: So again, they think they're communicating, but then when they realize it never got to the psychiatrist or the psychologist or whoever can be helpful with it, then again, it gets lost in translation.
• 9:24
  SPEAKER_04: So the the repetitiveness and the you know gumption to continue to keep driving that information into the system is taxing, but it's needed.
• 9:35
  SPEAKER_04: And sometimes, you know, for our family members, they're not really listened to when they have the most important information to be able to provide.
• 9:44
  SPEAKER_00: And we talked a little bit about that in our very first episode, didn't we?
• 9:47
  SPEAKER_00: Where we we talked about this new wonderful, life-changing patient medical portals that we're all supposed to be part of, this electronic record keeping and sharing.
• 9:58
  SPEAKER_00: But I'll tell you, it doesn't work between all the doctors that I go to.
• 10:02
  SPEAKER_00: I still have to fill out the same information.
• 10:04
  SPEAKER_00: So if Stephanie shows up at the CVS Urgent Clinic, they're not necessarily gonna have the records from my doctor who's down in you know a town 40 minutes away.
• 10:16
  SPEAKER_00: Despite the fact that I, we, I think most of us thought that that was the whole point of the these portals and this electronic medical record sharing.
• 10:28
  SPEAKER_00: Of course, and we're gonna talk about HIPAA and and and privacy rules and things like that.
• 10:32
  SPEAKER_00: But I I agree with you that where are you gonna keep this information?
• 10:36
  SPEAKER_00: You know, we're not walking around.
• 10:38
  SPEAKER_04: Right?
• 10:38
  SPEAKER_04: If you've got it, so you got these electronic records, my chart, we're hearing about all about my chart.
• 10:43
  SPEAKER_04: So great.
• 10:43
  SPEAKER_04: Do everything through your my chart, it's great, it's wonderful.
• 10:46
  SPEAKER_04: But then they don't look at it until afterwards.
• 10:48
  SPEAKER_04: Like, I'll give you an example.
• 10:49
  SPEAKER_04: My dad has his my chart open and going.
• 10:52
  SPEAKER_04: He's got five doctors for pulmonary issues, cardiac issues.
• 10:56
  SPEAKER_04: And I sat in on one of his telehealth visits through the portal, which was almost impossible.
• 11:02
  SPEAKER_04: And the doctor didn't even read the other notes until after my dad's appointment was done.
• 11:07
  SPEAKER_04: And she sent him an email through the portal to say, Hey, I was just looking at your note.
• 11:13
  SPEAKER_04: Why, why wouldn't she have done that before the appointment, right?
• 11:17
  SPEAKER_04: To give us real-time information.
• 11:19
  SPEAKER_04: Instead, my dad, who's in his 70s, is having to go back and forth inside this my chart that these people aren't even communicating on.
• 11:27
  SPEAKER_04: It's a very, very frustrating process.
• 11:29
  SPEAKER_02: I'd like to just add a couple things too.
• 11:31
  SPEAKER_02: I think we forget about how intimidating it is when you call these doctor offices or ERs about how sometimes people, even as a uh service provider, they poo-poo you if you're not calling at the right time, if you're calling at shift change, you're not gonna get any information.
• 11:48
  SPEAKER_02: If you're talking to a nurse that really doesn't care because she's got 20 other patients, the information may not make it to the right people.
• 11:55
  SPEAKER_02: So as a family member calling, I think it's very intimidating.
• 12:00
  SPEAKER_02: And so if you don't go into it knowing that you have to use, you know, your strong advocacy skills, you're gonna, you're gonna get turned away pretty, pretty quickly.
• 12:11
  SPEAKER_02: I will say though, I have a family member who's she's a it's a mother and she's a great advocate.
• 12:16
  SPEAKER_02: Her son just went to the ER, and somehow she got her son a state hospital bed within a day before any of us because she had kept all of the numbers from the last go-around and she used her resources.
• 12:29
  SPEAKER_02: But this is after years of advocacy that she's learned this skill.
• 12:33
  SPEAKER_00: Super information.
• 12:34
  SPEAKER_00: But you nailed it, right?
• 12:35
  SPEAKER_00: You have to put in years of advocacy, but you have to learn these skills.
• 12:38
  SPEAKER_00: You've got to be willing to learn these skills, you've got to be willing to be that advocate and and and step up.
• 12:44
  SPEAKER_00: Because, Stephanie, I'm sure you've seen plenty of parents and family members turned away because they're just a a visitor or they're just a an in semi-interested third party, but they're not the the actual person that we got to give care to.
• 12:59
  SPEAKER_00: Even though you're the primary caregiver, you see this person every day in your life, you're not, you know, you are the counselor to a degree.
• 13:06
  SPEAKER_00: Have you had interactions like this, Steph, with any of your clients of late?
• 13:11
  SPEAKER_01: Yeah, of course.
• 13:12
  SPEAKER_01: Dude, can you guys hear me okay?
• 13:13
  SPEAKER_01: Yep.
• 13:14
  SPEAKER_01: Okay.
• 13:14
  SPEAKER_01: You know, I feel like the family members, I have a few that want to get really involved, want to call, give the history, you know, help out where they can.
• 13:21
  SPEAKER_01: And they definitely get pushed to the side.
• 13:23
  SPEAKER_01: It's either too much information for the providers, or like Sarah said, it doesn't get to the right people in a timely manner.
• 13:29
  SPEAKER_01: So that's kind of where we step in.
• 13:31
  SPEAKER_01: But it is difficult to talk to the right person at the right time.
• 13:34
  SPEAKER_01: Sometimes the doctors only want to talk to other doctors.
• 13:36
  SPEAKER_01: They don't want to talk to us, or you leave a message with the nurses' station because someone's not available, they don't always call you back.
• 13:42
  SPEAKER_01: So it is very frustrating, or you have to be mindful about the shift change or when they're doing rounds because who's ever answering the phone might not know who your client even is.
• 13:51
  SPEAKER_01: They're not the right person to speak to, and the right person to speak to is not available.
• 13:55
  SPEAKER_01: And if you don't catch them in a certain window, if I wait till tomorrow, my client could be discharged.
• 14:00
  SPEAKER_01: I miss my opportunity.
• 14:01
  SPEAKER_01: And it it's hard to time it right and to get your information to the correct person so I can understand where a family member could become frustrated or stonewalled.
• 14:10
  SPEAKER_01: We deal with it every single day, but if when it's your personal loved one and you really need to get this information across and you can't, you know, it it's it's hard.
• 14:19
  SPEAKER_02: I just want to say I had a client this week who went to the ER and she drank she her blood alcohol level was 3.6.
• 14:27
  SPEAKER_00: And maybe 3.6.
• 14:29
  SPEAKER_02: 3.6.
• 14:30
  SPEAKER_00: That's that's that's that's comatose level.
• 14:33
  SPEAKER_02: Right.
• 14:33
  SPEAKER_02: And I asked the doctor to have her meet with psych for a psych consult.
• 14:37
  SPEAKER_02: And he informed me because she was not actively suicidal, that he could not refer her over to psych.
• 14:43
  SPEAKER_02: So it took me getting her treating psychiatrist to call the ER.
• 14:47
  SPEAKER_02: And but stuff like that, barriers, you know, here I am a service provider and I can't get it done.
• 14:52
  SPEAKER_02: I but I was able to mention that's nonsense.
• 14:54
  SPEAKER_00: That that that's taking the doctor is absolute nonsense.
• 14:57
  SPEAKER_02: It's nonsense.
• 14:57
  SPEAKER_02: But as a family, if I was a family member, I would probably just stop right there.
• 15:02
  SPEAKER_02: And so I think, you know, it's it's just tough.
• 15:04
  SPEAKER_02: It's it's very intimidating and overwhelming.
• 15:08
  SPEAKER_01: I do have something to add to from what Sarah was saying, but the other way around.
• 15:11
  SPEAKER_01: So I have a psych client that went to the hospital for medical and they attributed the symptoms as psych, which and they discharged her because psych cleared her, brought her back to her program.
• 15:24
  SPEAKER_01: The program fortunately caught her as the EMTs were dropping her off and said no, bring her back.
• 15:30
  SPEAKER_01: She was diagnosed with a stroke and they missed that.
• 15:34
  unknown: Wow.
• 15:35
  SPEAKER_00: I mean, bringing up all these, all these nightmares, all these memories.
• 15:38
  SPEAKER_00: I mean, I just had an incident yesterday where I tried to call a doc recall back a doctor's office who had called me twice.
• 15:45
  SPEAKER_00: I called them, they didn't know what I was talking about because of the shift change.
• 15:49
  SPEAKER_00: But remember, we had a client one time who went something like 17 times to the emergency room claim claiming that his arm hurt.
• 15:57
  SPEAKER_00: And they looked at him, and I'm not even sure if he kept complaining about the same arm.
• 16:01
  SPEAKER_00: But so they looked at his arm, they said, There's nothing wrong with you, and they sent him home.
• 16:05
  SPEAKER_00: You know, and our biggest gripe with that was, you know, you would think after 17 times of being of presenting at the emergency room, somebody would say, Hey, maybe something else is going on here that we should investigate.
• 16:17
  SPEAKER_00: So we've all seen this, we've all had these issues.
• 16:20
  SPEAKER_00: Sarah's Sarah's point about becoming a family advocate and understanding the roles and understanding how the mental health system works or doesn't work is vital to everybody listening and watching to understand to really get a hold of this concept and become that team member that is going to be a welcome team member instead of the rejected team member.
• 16:44
  SPEAKER_00: I want to say that we're going to talk about HIPAA next.
• 16:48
  SPEAKER_00: And I I I cringe just thinking about it, but we have to talk about HIPAA.
• 16:53
  SPEAKER_00: And one of the good things that HIPAA just did, everybody, this is a good thing, is that it finally got around to changing the laws so that we can discuss substance use on the same level that we do medical issues.
• 17:09
  SPEAKER_00: So doctors now don't have to go through a totally different federal law to get clearance to discuss issues that that go to substance use.
• 17:20
  SPEAKER_00: And I I submit, and I I I suspect that on some level this will be clarified and recodified within HIPAA when it comes to the discussion of psychiatric care and psychiatric need along with medical care.
• 17:40
  SPEAKER_00: So the Stephanie's case and to our case with the guy with the hurt arm, that you know, this this dismissal of an issue that is non-medical or non-psychiatric, whichever way you want to look at it, and and tie that in with something that is medical, I think is coming.
• 17:59
  SPEAKER_00: If it's not already here on some level, I think it is coming, it is down the road.
• 18:03
  SPEAKER_00: But so so with that, I think one of the things that overloads our system, and we're going to talk about our system overload segment, where we we talk about you know our clinical needs that are exceeding the infrastructure's capacity.
• 18:18
  SPEAKER_00: And and now we're talking about the infrastructure's capacity to understand and follow basically its own uh rules, policies, procedures.
• 18:27
  SPEAKER_00: This is where we stop asking how a patient is doing and start asking why is the machine failing or glitching when it comes to this patient.
• 18:36
  SPEAKER_00: And I want to talk about I want to talk about this relative to sort of a fact-checking segment.
• 18:45
  SPEAKER_00: And as we do that, I want to dismantle some of the the alleged uh HIPAA handcuffs for lack of a better term.
• 18:54
  SPEAKER_00: First of all, at the outset, we need to just say there is this myth out there that providers have and lay people have.
• 19:08
  SPEAKER_00: Everybody believes the same thing.
• 19:10
  SPEAKER_00: I can't talk to you, you can't talk to me.
• 19:13
  SPEAKER_00: This is private information that we're discussing.
• 19:16
  SPEAKER_00: Uh unless you have a release, unless the patient signs off on something, unless you have a super court order, I'm not talking to you, we can't talk.
• 19:24
  SPEAKER_00: Well, everybody hear me loud and clear.
• 19:27
  SPEAKER_00: I'll even quote the statute number for you.
• 19:30
  SPEAKER_00: It is 45 CFR 164, if you care.
• 19:34
  SPEAKER_00: And I always hated those kids in law school that would quote statute numbers and things like that.
• 19:38
  SPEAKER_00: So I'm not gonna do it, even though I just did.
• 19:40
  SPEAKER_00: But basically, the law specifically says that it allows providers to share information with families if it's in the patient's best interest, and the patient is incapacitated or unable to object, or you know, unable to put up a logical explanation as to why this is not a good thing.
• 20:04
  SPEAKER_00: So listen, hear me loud and clear.
• 20:09
  SPEAKER_00: When you go to the doctor's office, every single time they're sticking a HIPAA disclosure platform under your nose, and you're signing that 99% of the time you're not reading it.
• 20:21
  SPEAKER_00: But 100% of the time it's saying in there that here is what we do with your medical information, here is when we can and shall release it to other people.
• 20:31
  SPEAKER_00: You think what you're signing is something that says, we don't have any ability to release this at all, we're never going to release it.
• 20:38
  SPEAKER_00: You know, make sure you understand that.
• 20:40
  SPEAKER_00: No, that is not what you're signing.
• 20:42
  SPEAKER_00: Next time, read it carefully and get back to me if you find that I'm incorrect in this.
• 20:49
  SPEAKER_00: And what should be in there now is the changes to HIPAA that I just talked about.
• 20:54
  SPEAKER_00: The including, including some of the disclosures we can make is about your substance use history.
• 21:00
  SPEAKER_00: But there is this concept called the one-way street.
• 21:04
  SPEAKER_00: There is nothing in any law, HIPAA laws, privacy laws, confidentiality laws, there is nothing that precludes a doctor, a professional, any kind of covered entity from receiving information in.
• 21:22
  SPEAKER_00: Good information, bad information.
• 21:23
  SPEAKER_00: This is part of the problem.
• 21:24
  SPEAKER_00: This is where we go back to our communication discussion.
• 21:27
  SPEAKER_00: But there's nothing to stop somebody on the other end of the line from hearing what you have to say as a as a parent, as a family member, as an advocate.
• 21:38
  SPEAKER_00: So you could say to them when you pick up, when they pick up the phone, you say, Listen, I know you're not going to give me information, but I have very important information about Angela's client that she was just talking about, Stephanie's client, she was just talking about.
• 21:53
  SPEAKER_00: And and you need to know the medications that he's on in order to not, you know, give him count contraindicated medications.
• 22:00
  SPEAKER_00: You need to know this stuff.
• 22:01
  SPEAKER_00: I'm going to talk to you.
• 22:03
  SPEAKER_00: You don't have to say anything, just take down what I say.
• 22:06
  SPEAKER_00: Period, stop.
• 22:07
  SPEAKER_00: That's it.
• 22:08
  SPEAKER_00: So there's lesson number one.
• 22:09
  SPEAKER_00: We'll call it the one-way street.
• 22:11
  SPEAKER_02: So, Michael, I just want to add something.
• 22:13
  SPEAKER_00: I'm just giving you information.
• 22:14
  SPEAKER_00: You don't have to give anything back to me.
• 22:16
  SPEAKER_00: Go ahead, Sarah.
• 22:18
  SPEAKER_02: I just want to add one thing.
• 22:19
  SPEAKER_02: Some parents, some family members, sisters, brothers may get the facility saying, we cannot confirm or deny this person is here.
• 22:25
  SPEAKER_02: And that's okay.
• 22:27
  SPEAKER_02: You but I've people have said it to me, and I've said to them, okay, well, if that person is there, I'd like for you to take down this information and my phone number to be able to get it to the correct people.
• 22:38
  SPEAKER_02: So don't let that deter, don't let that deter you if they say, I can't confirm or deny.
• 22:43
  unknown: Yeah.
• 22:43
  SPEAKER_00: Marielle, do you still hear that one?
• 22:44
  SPEAKER_03: They're still using that line.
• 22:46
  SPEAKER_03: I sure do.
• 22:48
  SPEAKER_03: It's the most frustrating line ever.
• 22:50
  SPEAKER_03: And I'm like, well, I do just what Sarah said.
• 22:52
  SPEAKER_03: I'm like, okay, well, you can first write this down and throw it out if it don't matter.
• 22:58
  SPEAKER_00: No, agreed.
• 22:59
  SPEAKER_00: And and because I the reason I'm asking is because I haven't heard that one in a long time.
• 23:03
  SPEAKER_00: No, I it's just it's just absolute BS.
• 23:05
  SPEAKER_00: And you could listen, okay, we're gonna play this game, but you cannot deny that they're there.
• 23:12
  SPEAKER_00: Not you cannot confirm that they're there, fine.
• 23:15
  SPEAKER_00: I know they're there, but here's what you need to know about them.
• 23:18
  SPEAKER_00: There's nothing to stop you from doing that.
• 23:20
  SPEAKER_00: And and you and again, I think I don't remember who said it, who said it's intimidating, but don't be intimidated.
• 23:27
  SPEAKER_00: You could say this to these folks, you know.
• 23:29
  SPEAKER_00: Okay, you don't have to confirm or deny, but if they happen to be there, here's some really interesting stuff that you might want to know about this person.
• 23:37
  SPEAKER_00: But moving along, I I want to talk about this idea of information sharing because we've had lots and lots, and obviously we've already given you a bunch of little anecdotes and little case synopses of this.
• 23:52
  SPEAKER_00: But we had a really interesting case with a woman who ultimately wound up being living out her days in a nursing home because of a medical issue.
• 24:03
  SPEAKER_00: But it was a case that Sarah and I worked on 20 years ago or more.
• 24:09
  SPEAKER_00: And I don't want to use her name, but Sarah, you know who I'm talking about and the discovery that you made when you did a comprehensive look at the records.
• 24:18
  SPEAKER_00: Do you want to just talk a little bit about her case and and what that was all about and why it's important for this discussion?
• 24:25
  SPEAKER_02: Are you referring to the individual that every November she'd end up individual?
• 24:30
  SPEAKER_02: Yeah.
• 24:31
  SPEAKER_02: So God, this was back when I was 23, just starting out as a as a newbie social.
• 24:37
  SPEAKER_00: That was like 50 years ago.
• 24:38
  SPEAKER_02: I know.
• 24:38
  SPEAKER_02: It was like, yeah, 10,000 years ago.
• 24:41
  SPEAKER_02: So anyway, so I'm a new little social worker and I'm going out and meeting my folks in the community.
• 24:45
  SPEAKER_02: And this is my second year on the job.
• 24:48
  SPEAKER_02: And I noticed, geez, this, you know, we'll call her Penny.
• 24:51
  SPEAKER_02: Wow, in November, Penny had a really rough time and ended up in the ER and ended up hospitalized for two weeks.
• 24:58
  SPEAKER_02: And here we are back in December of the next year.
• 25:02
  SPEAKER_02: And what I'm looking back and saying, wow, Penny had a really tough time in November this year.
• 25:08
  SPEAKER_02: And at that time, we had a really good system of keeping track of ER visits and hospitalizations.
• 25:15
  SPEAKER_02: And I was able to look back because we had gotten previous data.
• 25:18
  SPEAKER_02: And I was able to look back like the last six years, and wow, Penny would go into the ER and hospital every November.
• 25:26
  SPEAKER_02: So it led to me asking Penny, well, what's going on?
• 25:30
  SPEAKER_02: So come to find out, her mother had passed away in November, and this was an anniversary of her death.
• 25:37
  SPEAKER_02: And no providers had put it together before that.
• 25:41
  SPEAKER_02: The following year, we came up with a really good plan in October.
• 25:44
  SPEAKER_02: She went to go see her mother's grave site.
• 25:46
  SPEAKER_02: There was some grief work done in that year.
• 25:48
  SPEAKER_02: And that following year, Penny did not go into the ER.
• 25:52
  SPEAKER_02: You know, we were able to work with her team to come up with a preventative plan.
• 25:55
  SPEAKER_02: And so that was a success story in my mom.
• 25:59
  SPEAKER_00: Well, and it it's just, and Stephanie and Marielle in particular.
• 26:04
  SPEAKER_00: Actually, Angela, you could chime in on this too, because one of the things that we make all of our workers do, and one of the things we do every time we pick up a new client, is to do an exhaustive search of every medical record we can get our hands on.
• 26:18
  SPEAKER_00: And this really comes into play when we want to put together what we call our timelines.
• 26:23
  SPEAKER_00: So, how much, Stephanie, actually, let's start with Angela, because she was the first, the first, I don't know, the first victim of this rule.
• 26:33
  SPEAKER_00: How did it feel when we made you go back 40 years?
• 26:35
  SPEAKER_00: Because that's our general rule.
• 26:37
  SPEAKER_00: Go back 40 years of of uh medical records and find out what's going on and what what do you think of it?
• 26:45
  SPEAKER_04: I mean, at first it depended too on which client I was working on.
• 26:48
  SPEAKER_04: Some of our clients had few records and it was easy to put together the timeline, very few hospitalizations.
• 26:54
  SPEAKER_04: But I remember I had one client that I requested her records on, especially for emergency room visits, and the UPS guy came in with paper reams full of medical records that I had to sift through.
• 27:10
  SPEAKER_04: And I was just thinking to myself, oh my goodness, how am I gonna get through all this?
• 27:14
  SPEAKER_04: And oh my goodness, what's going on with this poor client that there's this many records on her?
• 27:19
  SPEAKER_04: Like, what are we all missing?
• 27:21
  SPEAKER_04: Like it was it was an eye-opening experience, you know, to and it can be overwhelming.
• 27:26
  SPEAKER_00: It can be overwhelming.
• 27:28
  SPEAKER_00: And there are boxes and boxes of medical records sometimes, right?
• 27:32
  SPEAKER_04: Yep, you know, but the good thing is that I did have the time to be able to sift through it.
• 27:36
  SPEAKER_04: And luckily we did have a good system to be able to keep track of them.
• 27:39
  SPEAKER_04: And then we did see the emerging patterns from year to year, where spring and fall were just really difficult times for her, and so that we could put plans in, like Sarah did for her client, to help her manage these changes of season, which was her biggest struggle.
• 27:56
  SPEAKER_00: Well, and all of us go through seasonal changes.
• 27:59
  SPEAKER_00: I mean, some of us are impacted by seasonal affected disorder in a big way.
• 28:03
  SPEAKER_00: But you know, the cyclical nature of mental illness is just that.
• 28:07
  SPEAKER_00: It is cyclical, folks.
• 28:09
  SPEAKER_00: If you take some time and go back and do some serious introspection and some thinking about your loved one or your particular case, you could you can see patterns.
• 28:19
  SPEAKER_00: Stephanie, do you think that this exhaustive, laborious task helped you and continues to help you in your advocacy role?
• 28:29
  SPEAKER_01: Yeah, I mean, I I hate the timelines doing them.
• 28:33
  SPEAKER_01: They're they are difficult, especially like we get some clients, they don't have a lot of records, they're easy to kind of throw together, or the younger of our clientele age age-wise.
• 28:42
  SPEAKER_01: Then you get some that, you know, you're doing the timeline and there's mixed information, or we don't have all the information.
• 28:48
  SPEAKER_01: So there's like kind of estimated dates in there.
• 28:51
  SPEAKER_01: And I don't know why this placement ended, but you know, you do your best to put it together.
• 28:55
  SPEAKER_01: And they do come in handy, especially to identify, you know, reoccurring dates that clients are in the hospital or certain levels of care that clients have trialed and didn't work out for various reasons.
• 29:05
  SPEAKER_01: And I do feel like, you know, Mary Hell can attest to this.
• 29:09
  SPEAKER_01: Other people take our timelines, other people appreciate our timelines, they find them helpful, or they just they don't even have them on hand like we do.
• 29:17
  SPEAKER_01: And I try to bring them to every meeting I go to when they're going to be purposeful and just to show things that have been tried or how many times they've been in the hospital and keeping it all kind of in one place.
• 29:28
  SPEAKER_01: And then I can always reference back to certain dates, certain hospitalizations if I need to in more detail, but at least it's right there if I need it.
• 29:36
  SPEAKER_02: I just want to add one thing about what Stephanie said is one of the greatest gifts that our family members give us when we start helping them navigate the system is a timeline that they have kept.
• 29:47
  SPEAKER_02: And I will tell you for the family members caregivers out there, when you present your providers with a timeline, it's so much more effective than just saying, you know, Johnny was in this group home in 2026 or oh, he did okay at this place in 2016.
• 30:05
  SPEAKER_02: When you have that timeline that is very, you know, succinct and just very factual, your providers, the hospitals, they will all use it and then they will all incorporate it into their decision making.
• 30:19
  SPEAKER_02: So I can promise you that it's a very, it's a very good thing to do.
• 30:22
  SPEAKER_01: The family timelines I want to add though are very helpful.
• 30:26
  SPEAKER_01: I had a client, he's on the younger side, he's been all over the United States at substance abuse rehabs, various hospitals.
• 30:33
  SPEAKER_01: We wouldn't know about a lot of those because we do a lot of the Connecticut major hospitals.
• 30:38
  SPEAKER_01: And then if something pops up in those records, we'll request from whatever place is named.
• 30:42
  SPEAKER_01: But there's no way that I would know about every place in California or Florida or wherever he has been, if it wasn't for his mother graciously giving me a timeline and making my job easier.
• 30:55
  SPEAKER_00: Yeah, and one of the things that you talked about was the tried and true or the experiments or the failures, et cetera.
• 31:04
  SPEAKER_00: And I want to get back to that.
• 31:05
  SPEAKER_00: But Miriel, do you what do you what's your experience been?
• 31:10
  SPEAKER_03: I love the timelines.
• 31:11
  SPEAKER_03: I actually had a funny thing happen this year with one of them.
• 31:14
  SPEAKER_03: I have this client that's just been really struggling with substance use, and we were trying to get him committed for substance use, which I had never personally seen go the way we want it to.
• 31:29
  SPEAKER_03: So I was like, let me just make this timeline because he never lasts anywhere for more than three months, and then he's taken off.
• 31:38
  SPEAKER_03: So I made the timeline, I handed it out to the team.
• 31:41
  SPEAKER_03: I'm thinking, like, no one's really looking at this, and like, you know.
• 31:45
  SPEAKER_03: So then the hearing gets scheduled, and I show up to the hearing, and the psychiatrist on the hospital unit pulls out my timeline and she's reading from it.
• 31:55
  SPEAKER_03: And I'm like, for one, I don't know how that even got to you.
• 31:58
  SPEAKER_03: And for two, it was like a really like, you know, I'm making a difference moment.
• 32:04
  SPEAKER_03: I was like, you know what, we would not be here, and he ended up getting committed.
• 32:09
  SPEAKER_00: Well, yeah, no, and you know, we don't care how they get it as long as they get it.
• 32:15
  SPEAKER_03: I was happy that they had it, and the attorney had it.
• 32:17
  SPEAKER_03: I was like, you know what, everyone can have it.
• 32:19
  SPEAKER_00: I mean, Muriel wanted to do one of these, you know, on the champion.
• 32:22
  SPEAKER_00: Yeah, I want to stuff on the back.
• 32:24
  SPEAKER_00: She wanted the credit, but you know, that's okay.
• 32:27
  SPEAKER_00: We could we could pass the credit on to somebody else.
• 32:30
  SPEAKER_03: That's fine.
• 32:31
  SPEAKER_00: But one of the things that comes up in these timelines that is really important, and and I have to say, you know, back to what Sarah was saying, I remember being in a meeting, and the family came in with a timeline that they have been keeping since their their son was very young.
• 32:47
  SPEAKER_00: And man, the medical director of the department of mental health, I he would have thought it was Christmas.
• 32:53
  SPEAKER_00: He was so thrilled and over exude over the moon to get this detailed timeline from this family.
• 33:02
  SPEAKER_00: So she's not exaggerating, folks.
• 33:04
  SPEAKER_00: It goes a long way, and it means a lot to have not only have the records, but also to be able to filter those records through and also supplement them with here's what the records say, here's what here's what else was going on on the side.
• 33:20
  SPEAKER_00: Like, here's what was going on in our home.
• 33:23
  SPEAKER_00: And and part of that is that Stephanie brought up this idea of this revolving door that we always see.
• 33:32
  SPEAKER_00: Folks are brought into the hospital, they're right, they get a tune-up, I call it, and then they're discharged back out into the street.
• 33:40
  SPEAKER_00: Well, they're discharged back out into the street with a crummy plan.
• 33:43
  SPEAKER_00: That's the same crummy plan that got them into the hospital in the first place.
• 33:48
  SPEAKER_00: So, why are we gonna continue to try plan A over and over and over again if it's not working?
• 33:54
  SPEAKER_00: We need to try plan B.
• 33:56
  SPEAKER_00: And one of the things that these timelines illustrate is you know, definitively, is when plan A was tried before and and failed, when we decided it was failing, we're gonna try to plan B and C and D all the way until we we until well forever.
• 34:15
  SPEAKER_00: We just keep having to try new plans.
• 34:17
  SPEAKER_00: And that's one of the things that that these timelines record keeping our our carekeeper journal is really good at helping you to organize those uh those thoughts and those in those uh uh incidents.
• 34:30
  SPEAKER_00: But in in the case of Penny, uh this is not a matter of people not communicating with each other.
• 34:39
  SPEAKER_00: Everybody had uh the history of Penny.
• 34:43
  SPEAKER_00: People had been working with Penny, as Sarah said, she was a she was a spring chicken coming out of school.
• 34:48
  SPEAKER_00: We and Penny had been in the system 20 years before probably about the time Sarah was born, right?
• 34:53
  SPEAKER_00: So so Penny was already in the system for 23 years, and and there was 23 years of records on her or more.
• 35:03
  SPEAKER_00: It's a matter of taking the time to sitting and sitting down and going through the records and applying them and saying here's what it means.
• 35:10
  SPEAKER_00: And there's no better way to do that than to do exactly that.
• 35:14
  SPEAKER_00: Sorry, guys, sorry, Angela, Stephanie, Marielle, but we make our employees do this.
• 35:21
  SPEAKER_00: Our our team is going to go down, they're going to create a timeline.
• 35:25
  SPEAKER_00: Sometimes you get the benefit of having one handed to you from the previous worker, and then you just got to keep it moving, but it has to be iterative, it's got to be a living, breathing document.
• 35:35
  SPEAKER_00: And so, and and Sarah brushed over, and I want to go back to it, Sarah.
• 35:42
  SPEAKER_00: How did you take that information?
• 35:45
  SPEAKER_00: I remember, but I want you to say it.
• 35:47
  SPEAKER_00: How do how do you how do you take that information then?
• 35:51
  SPEAKER_00: And now we're back in September and October, how are we gonna how are we gonna present this in such a way that we're gonna try to stop, curve, lessen the impact of this cycle and this this psychological impact on Penny?
• 36:07
  SPEAKER_02: Yeah, so I number one, I didn't wait until September.
• 36:10
  SPEAKER_02: I know that you remember that.
• 36:12
  SPEAKER_02: I, as soon as I discovered it, I got her team together.
• 36:15
  SPEAKER_02: And then I've provided them with the hard data.
• 36:17
  SPEAKER_02: And sometimes, you know, that's just that's that just is right there, right in your face.
• 36:22
  SPEAKER_02: So I gave them the history, I gave them the actual dates and had them look at it.
• 36:26
  SPEAKER_02: And then we were able to convene just a brief meeting to kind of talk about this, who was gonna talk to Penny about it, helping Penny to kind of develop some insight around it.
• 36:35
  SPEAKER_02: And that was like the a major first step.
• 36:37
  SPEAKER_02: Once Penny realized that this was a pattern, too, she could also participate in her own treatment and also her own prevention plan, right?
• 36:46
  SPEAKER_02: So, and I this was so long ago, but I think what we did was we beefed up the supports around October.
• 36:52
  SPEAKER_02: We came up with the, we met with Penny, figured out what kinds of things she would like to do to honor her mother.
• 36:57
  SPEAKER_02: Her therapist was able to do some grief work during that time period.
• 37:01
  SPEAKER_02: So there was a lot of things that came together, but most importantly, it was a more proactive approach.
• 37:09
  SPEAKER_00: You do it to me every time.
• 37:11
  SPEAKER_00: You steal my my ver my words.
• 37:13
  SPEAKER_00: Proactive.
• 37:14
  SPEAKER_00: Be proactive.
• 37:15
  SPEAKER_00: It's a matter of getting out in front of this stuff, and that's exactly what you're describing.
• 37:20
  SPEAKER_00: And and I, you know, couldn't have summed it up any better, but there are certain times and there's certain cases where even all of this stuff doesn't work.
• 37:31
  SPEAKER_00: And again, this goes to another famous case of Sarah's.
• 37:35
  SPEAKER_00: Sarah's got all the famous cases because I guess they've been she's been with me and we've been together for so long that it's like these things, these cases have become folklore in our office, and we just talk about, oh, remember what we had to do with this one, remember what we had to do with that one.
• 37:50
  SPEAKER_00: So we talk about the safety net.
• 37:52
  SPEAKER_00: We're talking about cracks in the system now, and we talk about the safety net, which is full of holes because it's a net.
• 38:01
  SPEAKER_00: So we have to talk about those cracks.
• 38:02
  SPEAKER_00: And these are the invisible lines where families lose their voice and patients lose their way, you know, from the privacy rules that we're talking about, financial or or medical, medical care, insurance, things like this.
• 38:18
  SPEAKER_00: Why are the gaps here?
• 38:20
  SPEAKER_00: Yeah, who's falling through them?
• 38:22
  SPEAKER_00: We want to look at the person who fell through and start inspecting the holes in the net, or at least the holes in the floor that we're walking on.
• 38:33
  SPEAKER_00: So very often this leads us to the difficult patient, the difficult client.
• 38:40
  SPEAKER_00: Because very often a person with severe and persistent mental illness does become uncooperative.
• 38:48
  SPEAKER_00: And when they do, as we saw in our engagement uh discussion, it's very easy for all of us to retreat behind paperwork and behind policy and stop leaning into the support that's there, i.e., family members.
• 39:07
  SPEAKER_00: And Sarah calls it her check the facts case.
• 39:12
  SPEAKER_00: And I want her to talk about why she calls it that and and how that particular case and not checking the facts wound up being an issue.
• 39:23
  SPEAKER_00: So why don't you introduce that particular case, Sarah?
• 39:29
  SPEAKER_02: So I just want to start by saying I don't I want to remind people that we're talking about folks who sometimes are struggling in the community.
• 39:35
  SPEAKER_02: So I don't I don't I don't want to come to your microphone.
• 39:37
  SPEAKER_02: I don't think all folks with mental illness, you know, get into a point where they stop taking their meds or become I I think there's a lot of people out there who really are able to manage, right?
• 39:45
  SPEAKER_02: So we're talking about the folks that fall through the cracks.
• 39:49
  SPEAKER_02: In terms of checking the facts, say more about that.
• 39:51
  SPEAKER_00: What what are you talking about with that well we were talking about how in the modern era we're talking about electronic health records, right?
• 40:03
  SPEAKER_00: Yeah.
• 40:03
  SPEAKER_00: And that people should have information available.
• 40:08
  SPEAKER_00: And I've already told you that from my experience, they don't.
• 40:11
  SPEAKER_00: And that's just me on a personal level.
• 40:13
  SPEAKER_00: My personal doctors don't all have the same information that they should that I think they should have.
• 40:19
  SPEAKER_00: You know, I've had chronic ear issues since I was a little baby, and I have to re-explain.
• 40:25
  SPEAKER_00: And doctors, I've seen tens of thousands of ears in my life.
• 40:30
  SPEAKER_00: I've never seen an ear quite like yours, you know, it's a mess.
• 40:33
  SPEAKER_00: So I have to explain to the doctor why that is and what the situation is.
• 40:37
  SPEAKER_00: So if if things aren't getting into the electronic health records, it doesn't exist anymore.
• 40:43
  SPEAKER_02: Right.
• 40:44
  SPEAKER_00: And if we're not good reporters and we're not able to talk to folks and tell them about why our ear is such a mess, they don't understand, they don't look, they don't know.
• 40:53
  SPEAKER_00: So that's so it's a it that's one of the realities of the medical records.
• 40:57
  SPEAKER_00: But we're also talking about clients who are disjointed.
• 41:01
  SPEAKER_00: And no, of course you're right, that universally speaking, most clients are able to report and they are able to keep it together in a community.
• 41:09
  SPEAKER_00: But we are talking about difficult cases, that's why we're here.
• 41:15
  SPEAKER_00: So what I'm what I'm asking you about is the clients who come in and don't want to cooperate or lie to us or get really agitated with us.
• 41:25
  SPEAKER_02: So, okay, so there's two situations, and I'm not sure if this is the cases that you're talking about, but for Penny and Sherry.
• 41:33
  SPEAKER_00: So another Sherry.
• 41:35
  SPEAKER_02: So it's it's important to listen to your clients too, because in Penny's situation, not only were we able to determine that there was an anniversary that led to her decompensation every year, Penny would also report lots of medical issues, right?
• 41:51
  SPEAKER_02: And so her team had labeled her a hypochondria.
• 41:55
  SPEAKER_02: And again, I'm a new social worker, fresh new eyes, checking the facts, going through.
• 42:00
  SPEAKER_02: Every time Penny would complain of a physical ailment, I would call her case manager and say, Can you schedule her PCP appointment?
• 42:07
  SPEAKER_02: And the case manager would roll her eyes and would schedule the appointment.
• 42:12
  SPEAKER_02: And the doctor, I think actually on there it said hypochondria.
• 42:16
  SPEAKER_02: And they'd go in, get it checked out, and it would most likely be nothing.
• 42:20
  SPEAKER_02: And then, you know, two months later she'd complain of something again, and I'd ask them to do a follow-up appointment.
• 42:27
  SPEAKER_02: My my the way that I did social work back then was I wasn't gonna take the chance that it wasn't something, right?
• 42:34
  SPEAKER_02: So I always wanted it looked at.
• 42:36
  SPEAKER_02: Come to find out five years later, she ended up with a white matter brain disease, which was pretty significant, and that is actually what led to her institutionalization because she ended up losing the ability to walk and all this other business.
• 42:49
  SPEAKER_02: So again, do I know that the two were related?
• 42:51
  SPEAKER_02: I don't know, but I know that each time I advocated her to be seen.
• 42:55
  SPEAKER_02: And then the other story about Sherry is Sherry was in an institution and called me up and said there were there was blood on the walls.
• 43:03
  SPEAKER_02: And I, you know, instead of just calling up the social worker on the unit and saying, hey, Sherry is very delusional right now.
• 43:11
  SPEAKER_02: There is blood on the walls.
• 43:13
  SPEAKER_02: I calmed Sherry down and said, I'm gonna be up tomorrow.
• 43:15
  SPEAKER_02: And I uh I will come.
• 43:17
  SPEAKER_02: And, you know, of course I did, you know, pass the information along, but I wasn't passing it along that she was delusional.
• 43:22
  SPEAKER_02: And when I went to go visit her, sure, sure enough, there was some red paint in the wall that she was referring to that could have looked like blood.
• 43:32
  SPEAKER_02: I don't think it was, but again, checking the facts, I, you know, you always have to kind of do the extra step to make sure that you're listening and following through.
• 43:41
  SPEAKER_04: Just want to add to Sarah's thing too, and uh what Stephanie had made.
• 43:44
  SPEAKER_04: You know, one of the things too is for us, and hopefully that's doing these timelines and looking at the stuff is to be curious enough to actually look at it because in the records, oftentimes people will be put into programs and they'll say that everybody's in a group home.
• 43:59
  unknown: Yeah.
• 43:59
  SPEAKER_04: And then when you find out that the group home isn't a group home, it's actually a residential care home or it's a nursing home, but everybody's just grouping it as a group home.
• 44:08
  SPEAKER_04: So then when people go to make a recommendation for a level of care, if we don't have the actual correct level of care, people continue to do plan A over and over again, which goes back to everybody's thing of checking the facts and really making sure that what we're reading really is real and that we actually kind of explore that a little bit more, especially when we're talking about placements or you know, levels of care.
• 44:33
  SPEAKER_04: So I just wanted to put that.
• 44:35
  SPEAKER_00: Well, here you're talking about two different things.
• 44:37
  SPEAKER_00: Uh Sarah's talking about the unfortunate situations where we instantly roll our eyes and think, oh, this is just another crazy person talking about some hurt arm again, right?
• 44:53
  SPEAKER_00: And just dismiss it.
• 44:55
  SPEAKER_00: So and she's just illustrated.
• 44:58
  SPEAKER_00: We could come up with probably 10 more if we sat here and and really thought about it, where where the clients were dismissed and their their not their needs so much, but their concerns were were poo-pooed, let's say.
• 45:14
  SPEAKER_00: You know what do they call that when you you they say that you're lying, it's a nice way to say you're lying.
• 45:20
  SPEAKER_02: Malingering, malingering.
• 45:21
  SPEAKER_00: Malingering.
• 45:22
  SPEAKER_00: That's the nice social work way to say it.
• 45:24
  SPEAKER_00: Yes.
• 45:24
  SPEAKER_00: But and and then the different one that Angela's bringing up is the actual fact checking.
• 45:31
  SPEAKER_00: For instance, I I'm older than all you guys, so I still say nursing home, right?
• 45:36
  SPEAKER_00: Nursing home.
• 45:37
  SPEAKER_00: I grew up my my great-grandfather was in a nursing home.
• 45:39
  SPEAKER_00: So we've always called it a nursing home.
• 45:42
  SPEAKER_00: I don't, I'm not differentiating different levels of care when I'm talking about it in a nursing home.
• 45:48
  SPEAKER_00: I'm not talking about the acuity of the level of care.
• 45:50
  SPEAKER_00: But to your point, Angela, that could become really important because certain homes, certain placements, certain levels of care are not going to be able to handle the plan as Stephanie was talking about before.
• 46:05
  SPEAKER_00: He is now at a different level of care that cannot implement the same plan that we wanted to implement a year ago.
• 46:13
  SPEAKER_00: So we really all need to get back together and go back to the drawing board and find a different plan that will fit with environment that the that the individual finds themselves in now.
• 46:27
  SPEAKER_00: There's and that brings brings me to another thought that while Sarah was talking about how important do you think it is, Muriel, that we do the environmental aspect and the patient-centered aspect of care when we're when we're dealing with with folks.
• 46:53
  SPEAKER_03: You mean like patient-centered clients?
• 46:56
  SPEAKER_00: Yeah, patient-centered care, taking the patient where they're at.
• 47:01
  SPEAKER_00: Because as we said in one of our episodes earlier, you know, especially when we're dealing with paranoia, that paranoid delusion is that patient's reality.
• 47:13
  SPEAKER_00: And we very often want to put our own reality on things instead of saying, let's not dismiss this.
• 47:21
  SPEAKER_00: Let's go back and, you know, as Sarah would say, let's not dismiss this.
• 47:24
  SPEAKER_00: As Angela would say, let's go back and check the facts.
• 47:27
  SPEAKER_00: Let's take this patient for where they're at.
• 47:29
  SPEAKER_00: Let's start there.
• 47:31
  SPEAKER_00: And and do you see that that do you think we're good at that or you think we're bad at that?
• 47:38
  SPEAKER_03: I think I'm seeing that we are better with it these days.
• 47:42
  SPEAKER_03: I think I'm hearing it more, you know, meet them where they're at, you know, client-centered, which is important.
• 47:49
  SPEAKER_03: You gotta have their buy-in because we can come up with this whole magical, fabulous plan.
• 47:53
  SPEAKER_03: And if the client doesn't want to do that or doesn't have some sort of incentive, it's not gonna go well.
• 48:02
  SPEAKER_00: All right.
• 48:03
  SPEAKER_00: And and and and I guess that brings us to another level of communication altogether, which is the idea of actually, oh my God, imagine communicating with our client, with our patient, with our family member.
• 48:18
  SPEAKER_00: Do you think, Stephanie, do you think that that family members have a difficult time discussing a lot of these things with each other?
• 48:27
  SPEAKER_01: Yeah, I do.
• 48:29
  SPEAKER_01: I've had, you know, certain family members that are understanding and you could be very blunt with.
• 48:33
  SPEAKER_01: And then I have other family members that I try, you know, I'm not too descriptive.
• 48:38
  SPEAKER_01: I don't get, you know, too deep into certain things.
• 48:42
  SPEAKER_01: I use kind of more generalized terms.
• 48:44
  SPEAKER_01: I think some of our family members also, if they have limited contact with the client or when they see the client, they're good, they're great, they have trouble seeing the decompensated side or what the big reality of it.
• 48:57
  SPEAKER_01: I had a client in the hospital and his father at the time and brothers just, you know, no, he's fine.
• 49:04
  SPEAKER_01: You know, why can't he just go back to his apartment?
• 49:06
  SPEAKER_01: He never hurt anybody.
• 49:08
  SPEAKER_01: Like, yes, maybe that particular client is not physically violent, but he's still very delusional.
• 49:14
  SPEAKER_01: He's doesn't complete his ADLs, he's bordering on gravely disabled in the house.
• 49:19
  SPEAKER_01: So maybe that's not the appropriate level of care for him.
• 49:22
  SPEAKER_01: I do understand, you know, a lot of people just think as long as you're not violent and a bother to others, why not?
• 49:30
  SPEAKER_01: But there's deeper reasons, and it's difficult sometimes to get the family to understand that because their communication with the client or whether it be limited or not, you know, might not be that same outlook that the clinical team has.
• 49:44
  SPEAKER_00: Yeah, and you you you certainly bring up a couple of other things.
• 49:49
  SPEAKER_00: And and I want to I want to expand on that, but it's interesting because I wasn't thinking of it from that perspective.
• 49:57
  SPEAKER_00: I was thinking of it from the perspective of the family dealing with their loved one.
• 50:01
  SPEAKER_00: You're de you're talking about the family's lack of acceptance or they're they're dealing, they're the family's dealing with their own perception of the illness.
• 50:11
  SPEAKER_00: So, Sarah, we've seen a million times where families struggle to engage with their loved one, or they have boundaries that are really askew, good for good or for bad.
• 50:24
  SPEAKER_00: And that's kind of what I want, that's kind of what I'm interested in.
• 50:27
  SPEAKER_00: And and what kind of engagement tools.
• 50:29
  SPEAKER_00: I mean, I know that we have engagement tools to help families not only to discuss you know mental health concerns, but also just have a conversation.
• 50:40
  SPEAKER_00: What do you think, Sarah?
• 50:42
  SPEAKER_02: So I think that it's twofold.
• 50:44
  SPEAKER_02: I think, you know, you're talking about clients when we were talking about checking the facts who are not easily engaged.
• 50:51
  SPEAKER_02: And then there's other clients who want the family support and want the help and want all of that stuff.
• 50:56
  SPEAKER_02: I think it depends on the individual.
• 50:57
  SPEAKER_02: But I think as family members, we have to remember that we are mom, we are the sister, we are the brother, we are so there is it's it's complex because you want to continue to maintain support in that role.
• 51:12
  SPEAKER_02: And sometimes you're being asked to be the caregiver and actually helping and making, you know, help make decisions, help trying to get the person on board with something.
• 51:19
  SPEAKER_02: So it's a very kind of sticky situation to be put in because you don't want the person saying, Stop trying to act like my keeper, just stop trying to tell me what to do.
• 51:32
  SPEAKER_02: So it's a balancing act that it's it's so it's hard to say, you know, specifically for each person.
• 51:37
  SPEAKER_02: But what I have practiced by is as long as you're coming from a place of good and caring, you can typically always find a way to communicate what your concerns are to a person.
• 51:50
  SPEAKER_02: As long as you're coming from a place of good, not frustration, not trying to force something, but coming from a place of good is I think the number one thing that I can that I can recommend.
• 52:02
  SPEAKER_02: Um, I did want to add something out about check the facts though, too, in terms of when you have a loved one who maybe is, you know, not the best historian, not the best person.
• 52:11
  SPEAKER_02: How many times have we been in doctor's offices where they are typing and looking at the screen and you know paying attention to the person who's right there in front of them?
• 52:21
  SPEAKER_02: So they miss all of that information that's not on the screen.
• 52:24
  SPEAKER_02: So if you have a loved one that is willing to let you into that appointment, I would say go for it.
• 52:29
  SPEAKER_02: Because the amount of information that you can give that's not on the screen is that is extremely valuable for that provider who is probably only having five minutes scheduled for that person.
• 52:41
  SPEAKER_00: And let me let me add to that that the amount of information that you can get and come out with is huge too, because we've both you and I both personally have experienced doctors' appointments with our parents where we hear something completely different than what our parents hear.
• 52:57
  SPEAKER_02: Right.
• 52:57
  SPEAKER_02: From the client, right?
• 52:58
  SPEAKER_02: From the parent, from the client.
• 52:59
  SPEAKER_02: I will say we had a situation recently where we thought the person's providers were going into the appointment and we had asked them to make an appointment because the client was feeling lightheaded.
• 53:10
  SPEAKER_02: So we assumed the provider went in and we got the records the next week, and the client went in and basically said he had a sore throat and got screened for strep, and nobody did an assessment about the lightheadedness or anything else.
• 53:24
  SPEAKER_02: It was a strep test, two-minute appointment, provider didn't go in, missed opportunity, and the client had to go back.
• 53:31
  SPEAKER_02: So again, checking the facts is extremely important.
• 53:34
  SPEAKER_02: But I and I know we're kind of all over the place, but the communication is what I think we're getting down to the root of that.
• 53:40
  SPEAKER_00: Well, yeah, how about how about in that case the communication of not realizing that the provider wasn't going into the appointment?
• 53:46
  SPEAKER_02: They're sitting in the waiting room.
• 53:47
  SPEAKER_02: They said they were taking them.
• 53:48
  SPEAKER_00: Yeah.
• 53:49
  SPEAKER_00: Well, they were.
• 53:50
  SPEAKER_02: The assumption was that the provider was going in.
• 53:52
  SPEAKER_02: Um they were sitting in the waiting room.
• 53:54
  SPEAKER_00: Right.
• 53:55
  SPEAKER_00: Angela, what did you want to add?
• 53:57
  SPEAKER_04: I just wanted to just I mean, I know we're kind of are all over the place, but I think one of the I feel like we're all over the place.
• 54:04
  SPEAKER_00: Honestly, I think that this is following cohesive.
• 54:08
  SPEAKER_00: A little.
• 54:09
  SPEAKER_04: I a little.
• 54:10
  SPEAKER_04: I was just wanted to go back to the you know, the skills that we do and help our family members and our clients.
• 54:16
  SPEAKER_04: You know, one of the things I think we implemented it and we do it really well at is by having a half and half meeting.
• 54:22
  SPEAKER_04: So where a family member can say everything that they want to say that they don't feel comfortable saying in front of their loved one, right?
• 54:31
  SPEAKER_04: I mean, there are things that they would like to express.
• 54:34
  SPEAKER_04: And sometimes you come into the meeting and the client's sitting there, and the family member is not going to feel comfortable to divulge anything that's going on in the home or what they're hearing or what they're seeing.
• 54:45
  SPEAKER_04: And so I think one of the skills or one of the things that if anybody can take away from this is, you know, you can ask for a half and a half meeting.
• 54:52
  SPEAKER_04: I would like to meet with you providers for like the first half hour, and then we can bring Johnny in for the second part so that way, you know, the client is still being involved and participating, but the family member can also, you know, feel free to, in a safe space, say what they need to say, and also have the providers maybe come up with a plan on how to address certain things so that there's not an identified person for the client that may, you know, have some upset feelings about what might be discussed.
• 55:20
  SPEAKER_04: So I do think that that's one thing that you know we've done a really good job of is being able to give people a safe space to be able to talk and collaborate and and you know make the process a little a little easier.
• 55:34
  SPEAKER_00: No, and kudos to the teams because often the the teams are the ones that set that up when we have the meetings, especially in hospitals and whatnot.
• 55:42
  SPEAKER_00: And uh as you said, uh let's have an airing of grievances to quote Seinfeld.
• 55:49
  SPEAKER_00: You know, let's have an airing of grievances for the first 20 minutes of this discussion, and then we're gonna bring in Johnny.
• 55:55
  SPEAKER_00: And then the thing that I really like is how real good trained clinicians can frame this gripe, this consternation in a way to make it gentler and and help almost in a therapeutic way, a meeting of the minds and a coming together so that well, Johnny, how do you think that your mom feels when you blah blah blah?
• 56:20
  SPEAKER_00: Or mom, how do you think Johnny feels when you etc.?
• 56:24
  SPEAKER_00: Because it does go both ways, right?
• 56:27
  SPEAKER_00: It really does.
• 56:28
  SPEAKER_00: Muriel, did you want to add to that or are you good?
• 56:33
  SPEAKER_03: Yeah, I think sometimes you just gotta pivot because sometimes I love the half and half meetings, but sometimes you come in and the client's there and you're like, all right, I guess we're just we're going for it.
• 56:43
  SPEAKER_03: And sometimes to the professionals in the meeting will just talk as if the client's not there at those half and half meetings.
• 56:50
  SPEAKER_03: So I will always find myself looking at the client and being like, Well, what do you think about that?
• 56:55
  SPEAKER_03: Because they're talking like they're just not in the room, and then the client's getting upset.
• 56:59
  SPEAKER_00: Yeah, you know, I don't know what's worse.
• 57:02
  SPEAKER_00: Talking about the big plans for the client when they're not in the room or acting as if they're not in the room when you're making plans and not including them in it anyway.
• 57:11
  SPEAKER_00: I mean, I I those are A and A one or one one and one A, however you want to say it.
• 57:17
  SPEAKER_00: You know, that's that's uncomfortable, it's awkward, and I don't think anybody anybody feels comfortable in those situations.
• 57:26
  SPEAKER_00: But it happens, it does happen quite frequently.
• 57:28
  SPEAKER_00: You're you're not wrong.
• 57:29
  SPEAKER_02: In terms of the having the half and half, I feel like it's not to exclude the client.
• 57:34
  SPEAKER_02: I feel like in order for the client to have the best information and experience, they don't need to see their team members fighting, right?
• 57:42
  SPEAKER_02: They don't, it's almost a consultation planning meeting so that everybody can get on the same page.
• 57:47
  SPEAKER_02: Because I don't know if I was someone and I came in and all my providers were were fighting in front of me, I wouldn't trust not one of them.
• 57:54
  SPEAKER_02: I would say, y'all, y'all are, you know.
• 57:57
  SPEAKER_00: What's your level of confidence in any of these people to be able to work for me?
• 58:00
  SPEAKER_00: Yeah.
• 58:01
  SPEAKER_00: So what this comes down to, I think, is is a is a on a level we could categorize this under that boundary, that boundary title heading that that I talked about before.
• 58:13
  SPEAKER_00: Yeah, there's boundaries where families feel really awkward about can restricting a loved one's ability to do X or Y.
• 58:21
  SPEAKER_00: There's boundaries where there are disputes over a protocol or a policy or a way to treat an individual.
• 58:32
  SPEAKER_00: And we have to respect boundaries and we have to figure out ways that we we can deal within the boundaries on a comfortable level because it is awkward, man.
• 58:41
  SPEAKER_00: This is this there is some awkward stuff.
• 58:44
  SPEAKER_00: And and I will make one of the resources that we have available here as part of this podcast.
• 58:49
  SPEAKER_00: I will put up our list of, I think we have like 30 different engagement conversation starters just to help families and family members to start a discussion with their loved one that could open up the doors for a broader discussion of what's going on in the family or within within that particular loved one.
• 59:13
  SPEAKER_00: I think we talked about some really, really good tools here that families can really take away.
• 59:19
  SPEAKER_00: Like we talked about the one-way street concept.
• 59:22
  SPEAKER_00: Write a letter, make the statement.
• 59:24
  SPEAKER_00: You know, I'm not expecting you to give me info, but here's info for you.
• 59:29
  SPEAKER_00: Keep a paper trail because we cannot always be sure that uh a paper trail is going to exist electronically.
• 59:37
  SPEAKER_00: Having that documentation is huge and the the the timelines are huge.
• 59:44
  SPEAKER_00: The introspection that you and the the that you can bring to the table to help the team is is huge.
• 59:53
  SPEAKER_00: Uh don't forget about the best clause in the best interest clauses of things like HIPAA that say that if it's in the best interest of a particular client because of their lack of ability to cooperate, potential harm to themselves, et cetera, that information should be disclosed to team members and a team member should include a family member.
• 1:00:17
  SPEAKER_00: And then, you know, I I would also say that when you're dealing with your loved one, if you have any ability to get across to them when they are in their patient portals, make sure that you are in there as a person of contact.
• 1:00:34
  SPEAKER_00: They ask for that in those patient portals.
• 1:00:36
  SPEAKER_00: You you can go in and help them to edit their account information and put you in as a person to be contacted.
• 1:00:44
  SPEAKER_00: That's not necessarily a release, but it's at least something to include you in in the conversation if need be, and to what extent everybody and anybody can feel comfortable with it.
• 1:00:57
  SPEAKER_00: So I will say for Sarah, keep the hope.
• 1:01:02
  SPEAKER_00: You all know that you have to I have a different one.
• 1:01:04
  SPEAKER_02: I have a different one.
• 1:01:06
  SPEAKER_00: Okay, well, I'm I'll use your line for the week.
• 1:01:08
  SPEAKER_00: Okay, all right.
• 1:01:08
  SPEAKER_00: I'm stealing Sarah's keep the hope.
• 1:01:10
  SPEAKER_00: You all have these powers within you.
• 1:01:14
  SPEAKER_00: You have the ability to be the catalyst for change, you have the ability to foster communication on a much deeper level.
• 1:01:24
  SPEAKER_00: It's frustrating.
• 1:01:26
  SPEAKER_00: People don't talk, and I and I know it's the easiest thing to do because I do it all the time, is just hang up.
• 1:01:31
  SPEAKER_00: Right?
• 1:01:32
  SPEAKER_00: You guys could all agree.
• 1:01:33
  SPEAKER_00: They're all nodding their heads.
• 1:01:34
  SPEAKER_00: I know you can't see them, but I will just hang up when I get so frustrated because communication is just completely and utterly broken down.
• 1:01:41
  SPEAKER_00: Take a deep breath and go back to it later if you have to.
• 1:01:44
  SPEAKER_00: But you all have the ability to do this to overcome your intimidation.
• 1:01:49
  SPEAKER_00: So and Sarah would say, week in and week out, keep the hope.
• 1:01:53
  SPEAKER_00: So let's hear the new one, Sarah.
• 1:01:54
  SPEAKER_00: What's the lesson?
• 1:01:55
  SPEAKER_00: What's Sarah's take?
• 1:01:57
  SPEAKER_02: Well, since we're talking about checking the facts and advocacy and HIPAA and all of the stuff that we talked about today, my takeaway for this week is educate yourself.
• 1:02:06
  SPEAKER_02: So it's very easy, it's very easy to get overwhelmed and frustrated when you're in a place of crisis, when you're calling ERs, when you're calling doctor's offices.
• 1:02:15
  SPEAKER_02: Educate yourself.
• 1:02:16
  SPEAKER_02: Go on the website, look to see who the admins are.
• 1:02:19
  SPEAKER_02: When you're making phone calls, take down names, first and last names.
• 1:02:24
  SPEAKER_02: People, if they're being nasty to you, they never want to give you the first and last name.
• 1:02:28
  SPEAKER_02: Take down their name, take down the day that you called.
• 1:02:31
  SPEAKER_02: Because when and if you have to reach out to the higher ups, you now have a case of I've called this person, I've called that person.
• 1:02:39
  SPEAKER_02: I can assure you that nine times out of ten, when I call an administrator, they don't like to hear that people have gotten bad customer service.
• 1:02:47
  SPEAKER_02: And so again, sometimes you have to do it, but usually that's when things get moving and shaking.
• 1:02:52
  SPEAKER_02: So educate yourself, take a deep breath, make the phone calls, don't give up.
• 1:02:57
  SPEAKER_00: I got fired from a doctor's office one time because I complained about the nasty secretary.
• 1:03:03
  SPEAKER_00: But you know what?
• 1:03:04
  SPEAKER_00: That's for the better.
• 1:03:07
  SPEAKER_00: And I found a better doctor anyway.
• 1:03:09
  SPEAKER_00: We good to sign off and say goodbye.
• 1:03:13
  SPEAKER_00: Angela's unmuted herself.
• 1:03:14
  SPEAKER_04: Well, I always I always have my my thing.
• 1:03:17
  SPEAKER_04: Sarah has hers, I have mine.
• 1:03:19
  SPEAKER_04: Mine is to be curious.
• 1:03:20
  SPEAKER_04: If you don't know what it is, ask.
• 1:03:23
  SPEAKER_04: Look it up, Google it, try to put the pieces together for yourself so you can ask the right questions.
• 1:03:29
  SPEAKER_04: And also don't be afraid to ask the question if people are talking about things that you don't understand, know, not aware of.
• 1:03:37
  SPEAKER_04: And so mine is always to be curious enough to put yourself in that position, though, so you can ask the right questions and get the right information so you can make the best decision.
• 1:03:46
  SPEAKER_00: Yeah, I'm glad you threw that caveat in there.
• 1:03:48
  SPEAKER_00: But don't be afraid to ask the question because you asking the question can help other people who felt embarrassed to ask the question too.
• 1:03:56
  SPEAKER_00: And if you sit there and Google your fingers to the bone trying to get answers, you will you will find 17 different answers to one question.
• 1:04:03
  SPEAKER_00: If you want the yes, you'll find the yes.
• 1:04:05
  SPEAKER_00: If you want the no, you'll find the no.
• 1:04:07
  SPEAKER_00: But you'll google your fingers to the bone and and go down all kinds of rabbit holes that'll leave you more more confused, probably, than than before.
• 1:04:17
  SPEAKER_00: Go to somebody who knows and ask the question.
• 1:04:21
  SPEAKER_00: I'm gonna ask the question now.
• 1:04:22
  SPEAKER_00: Stephanie, did you want to add anything?
• 1:04:25
  SPEAKER_01: I'm good, but I will back everything that Sarah and Angela said.
• 1:04:29
  SPEAKER_00: Well, of course we have to.
• 1:04:31
  SPEAKER_01: I have to.
• 1:04:31
  SPEAKER_00: That's the rule.
• 1:04:32
  SPEAKER_00: Marielle.
• 1:04:34
  SPEAKER_03: Just to be gentle on yourself.
• 1:04:36
  SPEAKER_03: It's not gonna happen overnight.
• 1:04:37
  SPEAKER_03: It's taken me years to be assertive and not be scared to ask questions.
• 1:04:42
  SPEAKER_03: And still to this day, I'm there's times where I'm like, you know, I should have asked a question.
• 1:04:47
  SPEAKER_03: So it's an everyday growth of being assertive and asking questions.
• 1:04:53
  SPEAKER_00: So that's all.
• 1:04:56
  SPEAKER_00: All right, guys.
• 1:04:56
  SPEAKER_00: Thanks very much.
• 1:04:57
  SPEAKER_00: Been a great discussion as usual, and a sala bye bye.
• 1:05:02
  SPEAKER_00: We'll see each other and we'll see all of you listening and watching.
• 1:05:06
  SPEAKER_00: We'll see everybody and again in a week or two.
• 1:05:10
  SPEAKER_00: See ya.
• 1:05:11
  SPEAKER_00: Bye.
• 1:05:14
  SPEAKER_00: So, as we wrap up today's episode, I want to leave you with some thoughts.
• 1:05:20
  SPEAKER_00: In the world of severe mental illness, silent is not in the world of mental illness, silence is not golden, right?
• 1:05:33
  SPEAKER_00: It can be dangerous.
• 1:05:35
  SPEAKER_00: We've, you know, we've looked at the heartbreaking case of David, a man who didn't die because of his illness and the fact that his illness was untreatable, but because basically people were, I don't want to say ghosting each other, but we were we were we were hiding behind walls or stuck behind walls of privacy laws that for whatever reason.
• 1:05:58
  SPEAKER_00: When we treat HIPAA as a shield to avoid like the messiness of family involvement, we're not protecting patients' privacy per se.
• 1:06:07
  SPEAKER_00: We're stripping away the safety net that's there to protect their privacy and to protect their well-being, frankly.
• 1:06:18
  SPEAKER_00: We need to talk a little bit about this concept of compassionate communication.
• 1:06:24
  SPEAKER_00: Um it's a it's a term that came up in this 20th century CERES Act.
• 1:06:30
  SPEAKER_00: It's a call for all of us to stop hiding behind us, stop hiding behind our policies of our offices.
• 1:06:36
  SPEAKER_00: And and it's the message really comes down to this.
• 1:06:39
  SPEAKER_00: You gotta keep the paper medication list, keep your faxes, keep your facts, keep your faxes, keep your emails, keep shouting through the cracks in the system until somebody hears you.
• 1:06:51
  SPEAKER_00: Keep your timelines, keep all that information that you have because it is absolutely valuable.
• 1:06:59
  SPEAKER_00: You are the historians.
• 1:07:01
  SPEAKER_00: You are the ones who know the difference between a baseline mood and a medication induced crisis.
• 1:07:07
  SPEAKER_00: Your voice is a clinical asset, and don't think it isn't.
• 1:07:12
  SPEAKER_00: You are not a legal liability.
• 1:07:14
  SPEAKER_00: Don't let a no at the front desk stop you from sliding the medications under the door.
• 1:07:20
  SPEAKER_00: Literally.
• 1:07:21
  SPEAKER_00: Slide the list under the door if nobody will take it from you.
• 1:07:24
  SPEAKER_00: And for all you providers up there, you know, we know how overloaded you are.
• 1:07:29
  SPEAKER_00: We know how overloaded the system is.
• 1:07:31
  SPEAKER_00: We know how scary people make the system.
• 1:07:34
  SPEAKER_00: Especially, I think it's getting better, but you know, years ago, this whole HIPAA concept was frightening to people.
• 1:07:41
  SPEAKER_00: So we we need to know that you're there talking to the people who see the patient 24 hours a day.
• 1:07:51
  SPEAKER_00: We want providers to be inclusive of family members.
• 1:07:55
  SPEAKER_00: And I think we're coming a long way toward that, toward seeing the whole patient, not acute moments of illness, acute moments of psychosis or decompensation.
• 1:08:06
  SPEAKER_00: We're all just out here, guys.
• 1:08:09
  SPEAKER_00: We're all just out here trying to navigate the cracks in the system.
• 1:08:12
  SPEAKER_00: We're doing our best to catch these folks before they fall through the bottom.
• 1:08:18
  SPEAKER_00: So thanks for joining us.
• 1:08:19
  SPEAKER_00: And remember, we're all just holding it together, kinda, sometimes barely.
• 1:08:25
  SPEAKER_00: And we'll all see you next time for our next discussion.
• 1:08:29
  SPEAKER_00: And thank you for your support and thank you for watching.