Anne’s Closed Door

SPEAKER_03 0:02

The blinds at Anne's house hadn't been raised in three weeks. On the porch, the mail was stacking up utility bills and flyers, the mundane debris of a life in suspension. Behind that door, Anne was staging a protest, though she didn't call it that. She called it her right. She'd stopped eating, not because she wasn't hungry, but because her illness had convinced her that food was poison. Her treatment providers came to the door, they knocked, and they heard her voice from the other side. I don't want your help. I'm choosing to stay here. Go away. And so they did. In the name of client choice, the system stepped back. I'm Michael McNak, and this is the Holding It Together Kinda podcast.

Autonomy Versus Self‑Destruction

SPEAKER_03 0:52

Today, we're stepping into the chilling gray area of where self-determination meets self-destruction. When does our respect for a person's voice become a tool for their demise? We're exploring the story of Anne, a woman who used the language of autonomy to barricade herself against the very help she needed. But the story goes beyond Anne and all the Anne's of the world that are just like her. There's other stories of women and men who, due to the manifestation of their illnesses, make extremely poor choices. And many of us, families, providers, simply have to sit back and watch what we consider to be a slow-motion crash. I would also add that there are many, many stories that go along with Anne's story, and obviously, as always, we change the name of the person here. In fact, in this case, we even changed the gender of the person uh whose story this this particular case is based on. But there are so many stories that we have about this battle and this debate over choice. Um, Stephanie has a very uh good case to talk about. I've got several. I mean, we out collectively, we all have probably a hundred cases where choice uh really becomes an option. And and this is a good tag off of our discussion about addiction, too, because people obviously make the choice to do the drugs or alcohol that they are doing.

Recovery Model And The Pendulum

SPEAKER_03 2:40

I I should say that, and you guys could certainly chime in on this one, uh, Sarah and Angela, for the veterans and Stephanie, we've been around long enough, but our systems of mental health treatment about 20 years ago adopted what they collectively called a recovery-oriented system of care. And under a recovery-oriented system of care, rightfully so, the the object is to honor people's rights and honor and preserve their dignity, give them and encourage them to have choice, give them and encourage them to have autonomy and to get jobs, get educated, get work. I'm sorry, that's redundant, but along with that, became the pendulum really started to swing. And and sometimes, as we know, in anything in our socio economic and sociological world, including our political world, the pendulums tend to have a swing too far. So we're gonna talk today about this this debate around choice, and this may very well be uh the most important and most cumbersome topic that we discuss on this podcast, and it probably will rear its head many, many times. It is very frustrating for families who are struggling to care for an individual with mental illness when they are told that you know their loved one has the right to make choices. And as we've said in every every episode we've done to this point, people have the right to make bad choices. Sarah, Angelo, Stephanie, anybody have anything to add to this concept of recovery that I didn't talk about before we sort of move on?

Resources, Risk, And The Gray Area

SPEAKER_01 4:40

I I would just probably add on that one of the other things, when the you know, system of care became this recovery-oriented system of care, I think it was with good intention. However, I think though that the resources and the keep the promise, at least here in Connecticut, wasn't upheld. And so the other part of it is the lack of resources that kind of add to kind of hiding behind this, you know, recovery-oriented system. So I think it's almost like a twofold type scenario, at least definitely here in Connecticut.

SPEAKER_00 5:16

Well, I'm to piggyback on what Angela said, I think to speak up like on the term hiding behind recovery, I think the recovery concepts are great. And I I actually am a big supporter of, you know, recovery can happen and client choice needs to be given. I think where it gets a little icky is when clients are exhibiting behaviors, symptoms that are causing them to become in danger or danger to others, or where they're not meeting their basic needs. And I think that's the gray area because there's some professionals out there that will say, nope, they have every right to make poor decisions that could end up leading to death. And there's some professionals out there that aren't comfortable with that and are very risk adverse in that regard. So I think even within our own office, you kind of find that gray area. And so that's that's where people need to sit down. Clients, teams, family members need to sit down and really kind of hash it out because I think it's not black and white.

SPEAKER_03 6:21

I would add on Angela's comments as well, that there was a perfect storm, right? We had this recovery concept that came about, and as Sarah said, wonderful principles, you know, people should enjoy freedom. And despite the fact that you have a mental illness or developmental disability or anything, you have you have certain inalienable rights in our country. And and you you you certainly do have the right to be doing bad things or or not bad things, but things that would be detrimental to your own health. But we had a perfect storm as well, because we also had this concept of deinstitutionalization that came about, where we wanted to get more and more people out of hospitals and into the communities. And one of the things that Angela was alluding to was that you know, we had a chunk of money that was helping to support

Deinstitutionalization And System Gaps

SPEAKER_03 7:14

the institutions, and that chunk of money was supposed to follow people into the community to give us more resources to provide for them in the community, and as we all know, it just didn't and does not happen. So we we definitely have you know the sociological aspect of this discussion. We have a political and we have a financial, it's many, many layers. And I love what you just did. The term risk adverse is is a is a great term, and the other side of that coin is comfort, you know, risk comfort. I don't know what the uh comfortable with risk is the other is the other side of it. And I also want to differentiate here because another thing that frustrates people, I know because I'm part of the problem, is us lawyers, right? Uh lawyers who are advocating for their clients. Be very clear, folks, that lawyers are not there to do what is in the best interest of your loved one. Sorry, that's what the law says, right? This is what we lawyers do. We advocate what our clients want, not necessarily what they need. And and people really grapple with this concept, much like they grapple with the concept of providers saying, hey, we're in a recovery-oriented system of care, and your loved one has the right to make these bad decisions. So I I wanna I want to dive into this. And you know, in the intro I read about Ann,

Rights, Lawyers, And Best Interest

SPEAKER_03 8:56

I spoke about her refusal to open a door, her refusal to let social workers and and case managers come in and see her. And and Angela was with me on this case from from the get-go, so she can certainly speak to the facts of it. But guys, this went on for weeks, if not a couple of actually, it went on for a couple of months, where the barricade was up, and workers would go to the go to the house and knock, do this check-in, and Ann would be behind the door screaming and yelling obscenities and being abusive, and you know, get off my property. I'm gonna call the cops if you don't leave. And veteran worker, new worker, and everybody in between does not need that kind of abuse. They don't deserve that kind of abuse when they're trying to do their job and trying to help people. So this debate raged between Angela and myself and the staff in this particular case, uh and as well as the court-appointed conservator, because uh I I just could not accept the fact that they more or less said, okay, we're not Ann doesn't want any want us to be there, we're not gonna go. I could not accept that. I I could not deal with the fact that Anne was in her house by herself with nobody checking on her. And this gets to, I guess, the not so much risk risk averse, but really, folks, the the the big question and Sarah raised it is when a person is acting out and making these choices or

Weeks Behind A Door

SPEAKER_03 10:42

are are telling us what their choice is based upon the manifestation of an illness, is it really a choice? And that was the argument that I was putting forth. And that was not met uh very kindly in a lot of circles. Where people were saying, are you saying they don't have the right to make their own decisions? I say, no, I think they do have the right to make their own decisions, but they don't have the, they're not making a decision. Their illness is making a decision for them. And I think that there's a very big distinction there. Sarah, you wanted to say something on this?

SPEAKER_00 11:16

Yeah, I think on this case too, I think again, we're talking about the gray. We're not talking about folks that are managing and you know, mental health is on a continuum. I think we all have a little tinge of of something. We're talking about the folks that are on the fray, right? The folks that are really uh struggling in the community. And in this particular case, you know, the providers were going up to the sliding glass door and peeking in and seeing her, and that constituted a wellness check. I think in this particular case, I'm glad that we pushed and that the conservator involved pushed, because at the end of the day, if we didn't, she would have been dead. Because when we finally did get the wellness check, the in-person wellness check, she was in kidney failure. She wasn't eating or drinking. And I think that's where the gray is. Providers will go out and say, Well, we saw her, she's alive, and that's fine. But what is the bigger picture? And I think that's where it gets just mucky. And so you have to have, you know, I think a full kind of team discussion because, like, I know I wasn't comfortable with that. I know you and Angela

Is It Choice Or Symptom

SPEAKER_00 12:23

weren't comfortable with that until we knew that there was a medical workup because we knew that she hadn't left. We knew that she that food wasn't going in. Like there were things beyond just that we physically saw her and she was alive.

SPEAKER_03 12:35

Right. Angela, you wanted to add something?

SPEAKER_01 12:38

Yeah, just the the other, the other part that that's you know, frustrating, at least for for that particular case and some other cases too, is that talking through the door is not good enough. You can't say that that that's a wellness check because you responded. When you don't see the full picture and you can't get a full assessment, just talking through a door isn't isn't enough, especially for the clients that we're working with when you're talking about severe and persistently mentally ill folks who really are struggling with serious symptoms of delusions, paranoid thinking, you know, talking through a door just isn't enough. At least from my my perspective, and we're working with this population. There has to be, like Sarah said, that full assessment, the full team, really, really kind of pulling out all the different aspects that could be affecting this person that makes them so risky.

SPEAKER_03 13:32

Well, and and I, Stephanie, I know you I don't think you were working with us when we had this particular case. I know you've heard this story a million times, but I I don't want to leave you out. If you have anything to add, please just let me read.

SPEAKER_00 13:44

Stephanie had a similar case not too long ago with these this exact concept. And it's no, I know.

SPEAKER_03 13:49

I and I want to get to her case.

SPEAKER_02 13:50

Well, that's a different case. I did have something similar to this where we were doing wellness checks and the police were saying she's fine because she's responding, I'm fine through a door. Obviously, she's completely decompensated. She's very delusional, very paranoid. You're not getting that through a 30-second interaction. She also didn't have heat in the dead of winter, which again, you're not going to know by just peeking through a window or a door. And it got to a point of multiple months going by and

Wellness Checks Aren’t Through A Door

SPEAKER_02 14:20

she had severe frostbite, could have lost her toes, could have died if that didn't go on. And we got very lucky that she happened to start a small fire in her house. And that's when the police called the fire department and were able to make entry, but they were going to walk away that day if it wasn't for that small fire.

unknown 14:40

Wow.

SPEAKER_02 14:40

And then who knows when that interaction would have come back around again in what condition she would have been in, you know, a week later, a few days later.

SPEAKER_03 14:49

That is exactly on point. I I was thinking about the other case that you gave me the write-up for that I wanted to discuss also when it comes to choice, right? Uh-oh, Mackie hears a dog, he might be barking here in a minute. Sadly, in this particular case, in Ann's case, we never we did have lots of meetings. We had lots of meetings and we had lots of arguments, and I got I got fights with a lot of people that I don't think I've ever mended the fences with over this. And I've written plenty of articles about this situation and had a discussion with the commissioner of the department at the time who was really appalled with the situation, to be honest with you. And we we didn't get the resolution that we wanted. What finally had to happen was that the conservator, who happened to be a lawyer, stepped up and said, No, this is unacceptable. I'm calling the police and I'm gonna impress upon the police the urgency of this matter. And and frankly, as as we talked about, when the police got there, Anne was not responsive. They could not get a go-away,

Frostbite, Fire, And Forced Entry

SPEAKER_03 15:58

you know, F you through the door. They got nothing. So they kicked the door down, and sure enough, Ann was laying on the on the ground, as Sarah said, in renal failure, comatose. So, you know, I mean, this this and this goes to the idea of engagement, right? I mean, this is quite simply the lack of engagement in this particular case. But Anne was making a choice not to engage, according to uh the staff and and the providers at the time. And they were saying that, you know, in a recovery-oriented system of care, we have to honor that choice. And they were honoring uh the choice, and that but again, I go back all the time to the the question, and I guess I'm gonna just ask you point blank, Stephanie. If if a woman is making a choice based upon the fact that she is in a decompensated mental state, is it really a choice? Is she really making a choice?

SPEAKER_02 17:02

I don't know if I can give a straight answer to that. I'm probably gonna lean towards no because the sound mind is not there and you know it's not the best choice, but also, you know, that's out of the the eyes of the providers and the conservator. But there are a reason, there is a reason too that our clients do have conservators. You know, their their ideas and choices and decision making is skewed due to mental illness and they don't always make the best decisions. Um, but that kind of puts us two in difficult positions because we're making decisions on behalf of somebody else and what we feel is best for them, which may not always be right. We could be wrong, we don't know, but it's really difficult when the client is not agreeable to what the clinical team feels is beneficial for them and will make their life improved and more stable in the community and things that we see versus kind of going against what the client wants and maybe putting them into a situation where they're really not going to thrive there because they didn't choose that for themselves.

SPEAKER_03 17:57

You just touched on so many different excellent, excellent points. The ethics that's involved here, number one, we are going to discuss that in a podcast uh where I did an interview with the queen of bioethicist, Vicky Kind. So that that podcast will be coming out. So that's very important. I we also want to note here that a conservator or a guardian, depending on where you live, is appointed. Contrary to the lawyer, the conservator or the guardian is in put in place to make best interest decisions where somebody otherwise would not, right? That is the role, uh, the legal definition of a conservatorslash guardian. So where a lawyer advocates what their client wants, a conservator or guardian advocates for what they believe

Conservator Pushes For Action

SPEAKER_03 18:44

the client needs. So that's two points two, one and two. The third thing that you brought up, which is uh is another thing that we've discussed, and I don't know, I don't think we discussed it in the podcast to this point, but it's a much bigger topic, and that's why I think this this this discussion here is foundational to to what we do is the idea of a group of people getting together in a meeting and having a discussion about Anne and coming up with all the great goals and all the great things that they want for Anne and all the things that they're gonna have Ann do to make her life, quote unquote, better. And Angela, what happens when we don't ask Ann what she wants to do? What would make her life better?

SPEAKER_01 19:32

Yeah, no, that's very important. And if they don't have buy-in, then to Stephanie's point, they're not going to succeed either. I think the other the other thing too is, you know, clients do and should be involved in these conversations. They should be adding to it because you know, we can bargain, we can negotiate, we can, you know, give them a little something of what they're looking for with a little something that we might be looking for. And if you don't have that buy-in and you don't have that process, then the

Engagement After Medical Stabilization

SPEAKER_01 20:02

client obviously is going to struggle with wherever, you know, they are placed or the option that's presented to them instead of them having some autonomy into that choice.

SPEAKER_00 20:13

And I think that we're talking about an extreme case of life or death, right? But I think the everyday grayness is it's extremely important to engage your client and know what their hopes and dreams are and what their, you know, idea of quality of life is. Because if we're imposing our quality of life on folks, that's not fair either. That's not fair either. I think, you know, when we're talking life and death, that's you know, we can we can talk about that there needs to be intervention. But when we're talking about maybe someone's not keeping their home as neat and tidy as we would like, and maybe there's questions of is it safe in terms of public health? And I again, that's gray. And I feel like that's where we need to sit down and really have a discussion with the client, the team, and involve everybody. It's it's not black and white.

SPEAKER_03 21:05

Oh my goodness, I've seen so many sides, I've seen both sides of that coin where I've seen the most deplorable living conditions because of hoarding and just overall horrible living conditions. You know, and on one hand, it was determined to be okay. And on the other hand, and in other cases, it's just no, this is a hazard, this is a risk. But to Angela's point, client involvement and participation in these discussions is, I mean, fundamental to the recovery concept, to the con the recovery principles. And it's something that we at our office consider very important,

System Overload And Protocol

SPEAKER_03 21:47

and we hold it, you know, as a basic tenant to what we do. So I think that that's a no brainer. I tell a story all the time about a client that I had who had an acquired brain injury from getting hit by a car. And I was in a meeting. There had to be, there were over 20 people in this meeting. And we were all putting together this great plan. And she had money through the ABI acquired brain injury and traumatic brain injury waiver. So there was a pot of money, federal money, that was there for to spend for her care. And we were coming up with really great ideas about how all the cool things that we could do for her. But the problem was that she wasn't in the room, right? I remember she loved pepper. She put so much pepper, I mean, toast, she put pepper on toast. Black, she like her toast was black with pepper. And and some I don't remember who, but they were all upset about this that she was using so much pepper or that she was smoking too much. And I'm like, what are we worrying about? You know, I so it was it was a real eye-opener for me, you know, that she wasn't in the room. And I brought this up. I said, guys, how can we sit here and make all these plans and we don't even know if she appreciates

Blindness, Surgery, And True Consent

SPEAKER_03 23:02

or wants the things that we're we're planning for her? To to the point that Angela was making, we uh as human beings, just as normal people, will become much more invested in something that we had some had a a part of creating. If I tell you that I want you to quit smoking and you have no desire to quit smoking, what are the chances that it's gonna succeed? Basically none. And we have to remember that from every every aspect, every everything that we do. How does this impact well Angela? You're the person to ask this because I I frankly don't remember how this impacted the family. What was the family because they were in Florida at the time. That's how this happened, because they they went left for Florida for for the winter, and and this is what what happened. But I and I don't remember what Ann's parents were saying and and and doing during this time. But I mean, imagine being the family member who's being told, yeah, Ann's locked herself in the house, we can't see her, and that's her prerogative.

SPEAKER_01 24:14

Do you remember, Angela? Yeah, I mean, they I mean, we have to go back a little bit on their history too. I mean, they were very fearful. So when Anne was not on her medications and stuff, Anne was aggressive and assaulted to some of her family members. And although they had some compassion and understanding of this mental illness, you know, they allowed her to stay in the house. But their hope and desire was for a better quality of life and for a place for her to go to. So, in actuality, towards the end, I mean, it was they were grateful and hopeful that Anne was finally going to get to some place that she was gonna be safe and that she was gonna be able to not be so you know an isolated person in a in a basement house, right? I mean, they they were hopeful at that point in time. But before that, though, it was fear and frustration and you know, lack of understanding of the system and you know confusion about again what's risky, what's not, you know, they they were also on that gray line of you know what is what is safe and not safe or for their loved ones. So it was kind of a twofold.

SPEAKER_03 25:28

They were very respectful of of the right to choose and and you know, some families really struggle with that, but I do remember that this family

Gangrene, Capacity, And A Son’s Plea

SPEAKER_03 25:36

was very respectful of of Ann's ability to live and do what Ann wanted to do in terms of working and driving and coming and going. They gave Ann the place to live in their home in a law apartment. And so it it goes, it's just it's not anything set in stone. It certainly is fluid. It is certainly case case by case, family by family. I I would say that one of the most poignant quotes I've ever heard in the 30 years I've been doing this, however long I've been doing this now, was when the conservator said to us as a team, you know, Ann has not eaten or had anything to drink in over three weeks or something crazy like that. I don't remember what the actual time frame was. And the conservator said, Even my dog knows when he's thirsty to go get up and if he has to go to the bathroom and drink out of the toilet bowl. And he wasn't trying to be funny, he was trying to be very serious and very poignant that this woman was not making a choice because she had her faculties and she was making an informed decision. She was making a decision based upon the manifestation of illness. So that was that was a real wow moment. And and I, you know, if and when I do see him, the conservator, I give him credit for that every time I bring it up because that really stuck home.

SPEAKER_00 27:07

But I want to get into um can I add just one thing about the end of that story? So the story didn't end there. Once we got Ann into the hospital, that's where the engagement started. And again, I feel like if we had had engagement, good engagement, solid engagement, and nobody's fault, but if if the stars aligned and we had good engagement prior to, you know, the knocking on the door through the window, maybe things would have, maybe Ann would have been more engaged and we wouldn't have had gotten to that point. But for whatever reason, it didn't happen. And and it wasn't the lack of trying. But once we did get Ann to the table, once Anne was better, once we got her in an environment where she could heal a little bit, she was involved in her treatment and she is currently living, you know, a life that she chooses, and we were able to get her the supports when she was doing a bit better. So, I mean, that it goes full circle.

SPEAKER_03 28:04

No, of course it doesn't. And I'm glad you you said that because I think that

Macro Ethics: Homelessness And Suicide

SPEAKER_03 28:08

we need to remember this the spirit of this podcast, folks, is not to be a bitch fest. It it really isn't. What we're trying to do here is to really point out and and to verify for you all that some of the issues that you're facing are real, that they're out there, and we've seen them, and we're gonna talk about them, we're gonna flesh them out to the best of our ability because you you know, your frustrations are heard, your frustrations are felt and shared, and what you are going through on your journal journey is not alone. There's other people out there who have experienced it and other people who can learn from it from you, from us, and that's why we're here to talk about it. But yes, these I mean, this particular story did have, thank goodness, a happy ending. I I actually wanted to bring up a couple of other stories that were very similar to this, but let me just do the intro. Let's let's get into our our our system overload segment here, because I think that's pretty much what we're talking about. It's it's where clinical needs exceed the infrastructure's capacity to meet those needs, like the blown fuses we talked about, revolving doors, records that are missing, data blackouts. This is where we stop asking how a patient's doing and start asking why, why is the machine glitching? And in this particular case, we start to confuse this concept of legal competence with clinical reality. And it's the machine kind of starts stops protecting the person and starts protecting protocol. And I don't like that. I don't know how else to say it. I don't I don't like that feeling where we're we're not protecting the person because Stephanie, isn't it supposed to be all about the person?

SPEAKER_02 30:09

Yeah, I I think so, but right.

SPEAKER_03 30:14

I so I had a case years ago. I I had two cases that I think are are on point here. One of them was this little old lady who was living in a nursing home and she had been there for 20 years. She was old, she was in her 90s

History, Records, And Sound Mind

SPEAKER_03 30:30

at the time, and basically she had cataracts and major eye problems that were making her blind. But this woman, because she lived in his nursing home for so long, was able to, she knew how many steps it was to her bathroom, she knew how many steps to get to the cafeteria, to the TV room. She counted it off in her head and she knew where she was. There were railings there in every nursing home you go to, there's railings that help them to walk, and she did that. Well, going back to this debate about you know the person protecting the person and preserving protocol. The staff at this particular facility wasn't happy with this because they thought that she was a danger. She thought she was a risk. They thought she was a risk, hurting herself, not necessarily hurting others, but certainly hurting herself, and they wanted to protect her from herself. So they followed their procedures. And I got appointed to represent the woman as her attorney. And I talked to her at length about it. And yeah, she was in her 90s, and yes, she was basically blind, but she was very clear that she did not want to have the surgery, which I mean, uh, from what I understand, cataract surgery is very easy. It's not, it's not really all that bad anymore. Now it's really done pretty regularly and routinely in an outpatient basis. She just didn't want it, she refused. And we brought it, they brought it all the way to court. And I defended her her her uh position. And basically, you know, the the question became what are we gonna achieve by forcing her to have the surgery? And how, by the way, are we gonna force her to have the surgery? 90-something-year-old woman, what are we gonna strap her

Revolving Door Case Study

SPEAKER_03 32:16

down and give her a knock her out and do the surgery on her? And I don't think you could even do that with cataract surgery, but I don't know. Angela, you wanted to say something?

SPEAKER_01 32:24

Well, it just it kind of goes back to the I know that's your protocol and stuff, but what was she doing though to say that she was a risk, right? It's not like she was falling, it's not like she was tripping. And again, I think, you know, and you know, and it is client choice whether they get an elective surgery like that, right? I mean, you can see people can function without seeing and gather other senses. I don't know. I agree with you. I think that that's a case where, you know, the client needs to be involved in that process and is making a sound decision. There's no there was no delusional process around it. It was, I'm getting older, I can't see, I'm choosing not to have a surgery. However, I'm still functioning. And that's like, where was the nursing homes, you know, evidence to say that she wasn't functioning enough where they were going to change her whole life because she couldn't see?

SPEAKER_03 33:09

No, no, and and by the way, I think that there was a degree of perhaps dementia here with the woman. I think maybe just maybe a little, but it wasn't the overarching this the overarching thrust of her her decision making wasn't uh on this particular thing. She just didn't want that surgery, she was afraid of the surgery. And I will be, I will, I'm happy to report that the judge did agree with me and she never wound up having to have the surgery.

SPEAKER_00 33:34

So were they trying to put her in a wheelchair too? Because that could be restraint to some degree, you know. I think sometimes the systems end up doing what it they feel is the easiest instead of what might be in the best interest sometimes. And so I've seen that happen too, where people are kind of you know forced to kind of be in the wheelchair instead of really giving the the treatment and therapy that they need to be able to recover in some situations too. And it's sad.

SPEAKER_03 34:00

No, and you're you're absolutely right. They didn't. In this particular case, they didn't. This lady was immobile as you as you wouldn't believe. I mean, she could get around that place like you, like you read about, and they didn't try to stick her in in a wheelchair, which I never even thought of. So I don't know where you came up with that one. So kudos to you. I and another case that I had it was an emergency situation where I was appointed as an emergency conservator for a woman who had gangrene in her leg. And she was adamant that she did not want that leg taken off. And, you know, this is getting it was getting to the 11th hour where the doctors were basically saying to me, she needs that leg off or it's going to kill her. Long and short of it, if she didn't have the leg taken, it was going to kill her. And I could not get her to agree to have the surgery. She would not do the surgery. And the judge put me in a position to, you know, to tell the doctors what the woman wanted. And, you know, then we have the debate over choice and best interest and quality of life. I, you know, absolutely. So this woman,

Courts, Moments In Time, And Beds

SPEAKER_03 35:10

let's say she has the surgery, and now she's gonna have to live without a leg. She didn't want that for herself. Now, I think that the the infection had also impacted her cognitive abilities, and I think that's what the the hospital was arguing. But boy, she was steadfast. And and the resolution to that one was that at the 11th hour, her son that we never even knew she had got wind of what was going on, came down from Boston, held her hand, talked to her, and convinced her to have the surgery. But, you know, that was a situation that this lady was going to be left probably to die of a of a horrible infection because she just would not agree to this surgery. I don't know what to say. What else? What else I could possibly add to that story other than it's horrific, you know, it's scary. But in that case, again, I was acting as a conservator. So I was in the position where I was gonna have to advocate for her best interest. In spite of the fact that she didn't want the surgery, I was probably if it if the son didn't rescue me, I was probably gonna have to get get the surgery for her based upon my role as a as a conservator. So on a macro level, Stephanie, when Ann is refusing food and water and refusing a check-in, is the delusional disorder that she's in, is it a a symptom more than a choice or a choice as opposed to a symptom?

SPEAKER_02 36:47

I think it's more of a symptom. I mean, obviously she's she has decompensated to a point where she's not prioritizing her basic needs to live at that point. And, you know, I'm not in her mind, so I can't say for sure. You know, some of our clients do have certain periods where they just kind of fail to thrive and give up, and maybe they are thinking a little more clearly. But for for most of our clients, when they do decompensate, you know, their paranoia, their delusions are just so strong that they don't have those, those natural decision making to do things to continue to live. You know, it's just so debilitating to them that they're neglecting their basic needs. Same thing with my, you know, my client that that didn't have heat for, I'm not really sure how long, but maybe two, three weeks in the middle of December and January, you know, couldn't, couldn't think to herself, I need heat, I'm going to freeze. And it got to a point

Liberty, Grave Disability, And Fear

SPEAKER_02 37:40

of having to have emergency personnel kind of take her out of that situation. And I don't know if she's I would have ever came to the decision on her own to figure out a way to reach out to somebody to say, I need help, I'm freezing to death.

unknown 37:53

Right.

SPEAKER_03 37:54

And I wonder if we think of it as rather than looking at a micro level at the individual person, if we think about it as a, and Sarah, I got a question for you. Rather than thinking about it on the micro level of the person or Anne in this case, is it a symptom on a macro level? Is it a symptom of the system, the treatment, or what we as a society have accepted as acceptable?

SPEAKER_00 38:20

So I think you are touching on a national discussion right now. Of course. Two things that I can think of on the national level that are being discussed with client choice, client, right? All of this business. So we just recently had a blizzard, right, in the Northeast. And one of the things that was being discussed is, you know, folks that are homeless in New York City, you know, do they have a right to be homeless on the streets in a blizzard? And like there were a number of deaths, you know, for for people freezing to death out in the cold. Or is there a right to protect them and you know, an obligation. For an obligation, an obligation to protect them and kind of force them into shelter until the blizzard passes. So that's one of the things that have come up recently in the news. And then the other thing is on a national level is the right to suicide. And so this kind of goes back to the of sound mind that Stephanie that you were just talking about. And in that national discussion, people are weighing in on left and right sides. But the difference is that there's discussion about needing to be evaluated. Are you of sound mind? Are you in severe depression and are making this decision, or are you of sound mind? And that's a, I think that's at the heart of all of this. Is the person making these decisions of sound mind?

SPEAKER_03 39:42

Well, and I and I know that you were with me when we had the discussion with the legal rights advocates who really did not want to hear me say that this person is not making a choice. They don't, they cannot make a choice because they're not of sound mind. And they they did not want to hear that from me at all. But I I st I I still stand by that. I think that, and I think Stephanie said it too. I think it's a symptom. And I think that if a person is manifesting an illness and they're making decisions or they're they're doing things, I mean, think about think about a plea of insanity, all right. I mean, we have it in so many

Harm Reduction And Rolling With Resistance

SPEAKER_03 40:20

different um institutions that we do accept or maybe grudgingly accept. You know, if a person is making a decision or taking an action based upon the fact that they're they're not altogether in their right mind at the time, then is it really a choice? Is it really a decision?

SPEAKER_01 40:40

Angela? I was just gonna just, you know, I agree with everything that it's already been said, but the other big part of it too is this is why it's important that we know people's histories. Like, you know, to really show that this is a trajectory of when you're not on your medications, your paranoia and your other symptoms may increase where you are doing more dangerous things for yourself that put you more at risk. And so that's why it's really important that, you know, records and information get discussed, you know, when we're working with certain people to show that when they're on medication or when they're in treatment or when they're engaged or when they're feeling safe, they're not having these thoughts. But when those things are removed and those thoughts are there, I mean, I think it's pretty clear evidence that that's somebody who is making an irrational thought and an irrational decision for themselves.

SPEAKER_03 41:30

And you lead us right into our next segment, which is what we call the cracks, the the invisible lines where families lose their voice, patients lose their way. You know, we have rigid privacy barriers sometimes, we have financial abysses. Why are these gaps here? Why is that gap in studying and knowing the person's history there? And how are we as a system and we as providers falling through those cracks right along with the clients that we're meant to serve? And along those lines, in this particular case, and I love what you just said because it's it just goes to her perfectly. Does the ability to state a preference automatically mean that a person has the ability to make life-altering decisions? And if we don't know any better, and somebody comes to us now, yeah, no, I'm thinking about the woman with the gangrenous leg, she was she was definitely not in a right in in a in a good rightful mindset when she was talking about dying rather than losing a leg. I I just know she wasn't, and the doctors felt she wasn't too. So she but she was steadfast, man. She was making that decision, and in this case, was making a decision not to engage, not to eat, not to drink, but more importantly, not to engage. And we to we take that as wow, if they're so emphatic, they must be, they must really know something that we don't know, I guess. I don't, I don't know. But Sarah, if if the brain is hijacked, is it a

If Anne Were Family

SPEAKER_03 43:12

choice? I mean, I and this it's just eight million different ways of answering and asking the same question. What do you think?

SPEAKER_00 43:18

Well, I think that's where assessment is needed by professionals. I mean, again, I could be a lay person out there and see someone homeless on a park bench. I don't know if it's a choice or not. I think that's where you need to seek out the professional help. And I think when some of our families do seek out that professional help and the person goes to the ER for that psychiatric evaluation, I think that's where the crack actually opens up, you know, sometimes and devours the person, right? Because the psychiatrist, the social worker, whoever, they're looking at one moment in time. They're looking at one moment in time, and that's all they're seeing. And so that's why it's really important for us as professionals, family members, whoever, to call and speak to that doc. Because, you know, the more information, the better. Because then they're able to make an informed decision of is this choice or is this a manifestation of the illness? And so I just the more information, the better. I always say if you're a family member, give a call, keep calling till you speak exactly to the doctor, because at the end of the day, they're seeing however many patients, and it's just one moment in time that they're looking at.

SPEAKER_03 44:27

Right. Instead of looking at the totality of the circumstances, and that's where we go back to the carekeeper journal that we have available for people to have the record. One of the best things we do in our office is the intensive, exhaustive record searches and going back over the course of time and looking historically at a case, looking at what a client had chosen in terms of where they wanted to go to a hospital, which hospital they wanted to go to, who they wanted to bring to the hospital, bring them to the hospital, what medications they preferred to be on. Those are all so important and they do go to this choice. In fact, our laws were rewritten to include history and the

Support, Burnout, And No Perfect Answers

SPEAKER_03 45:15

customary practice of an individual as part of the consideration for how we should move forward in our in our contemplations of acting as a fiduciary or a conservator. So it's that important, folks. Get yourself the journal or a journal. Make sure you have these records and you've kept good documentation about the history of the case. And it just it's head scratching, Steph. And you don't have to go into you know great detail, but the case where the woman kept getting discharged home with the same crummy treatment plan. Go ahead. Tell us just a little history of that one.

SPEAKER_02 46:06

Yeah. So this particular client, she lives alone in an apartment with a Section 8 voucher, very minimal services, you know, visiting nurse case management from Demis, but that's about it. Right now we're probably on a timeline of about every month, every other month she goes to the hospital. She may or may not be admitted to the psych unit typically. She is admitted. You know, we we go through a lot of the probate court commitment hearings to try to commit her to keep her there longer. She just, you know, she'll get discharged. Sometimes she's on a different medication that she agrees to take while she's at the hospital. She'll get out and start refusing it in the community. But we we kind of run through the same thing. So she'll she'll get discharged. She'll be good for a week or two. And then we start to see the symptoms start. She's delusional, she's paranoid. She calls the police very frequently. She believes people are tampering with her clothing, with her food. So these things end up get getting thrown away. She's very negligent to medical recommendations and or neglectful, I should say, to medical recommendations and medical appointments. And she

Closing Reflections On Choice

SPEAKER_02 47:10

has a very serious heart condition as well. So this opens up, you know, another door for safety in the community in that retrospect. So we're we always look at this big picture and are waiting for the opportunity to get her into a state hospital and hopefully give away the apartment and give up the Section 8 voucher because she is just not agreeable to going anywhere else but back to that apartment. And we've offered, you know, everything under the sun to her to keep her there: different meds, long-acting injection, mental health waiver services. She's not agreeable to any of it. And we just we're on this revolving door with her.

SPEAKER_03 47:45

And that's true, and you know, the trauma of the revolving door to her, never mind to you and all the people who are working on her case, which is a fair, a very real thing, this caregiver burnout thing is a very real thing. But to her, the trauma of this cycling has just got to be horrific. And and one of the things, and I don't think that's the case here. I don't think that it's the case where they just keep discharging your back into the community with the same plan. You guys have implemented several different plans along the way and tried several different things, hoping they would stick and that she would be amenable to them. Is that correct?

SPEAKER_02 48:17

Yes, yeah. We've definitely tried different things. They try to give her different medications while she's on the psych unit. Sometimes she's agreeable to those, sometimes she's not. But what we've seen probably, I want to say, over the last six months or a year is she'll agree in the hospital because she knows she needs to to get discharged. And then we get into the community and the story kind of changes. So we have tried different things. Sometimes we're successful for a couple of weeks in the community with that different treatment of, you know, plan of treatment. And then we kind of revert back to exactly the same medications and and kind of that similar presentation. And I do really just at this point, I feel bad for her. You know, her delusions and symptoms and paranoia are so debilitating that, you know, she feels she's being assaulted in the community or harassed in the community consistently. And that's just got to be a really difficult way to live day to day.

SPEAKER_03 49:05

So her her paranoia is that real to her that she, you know, this is and that's an important thing that people need to know and and need to remember is yeah, as as crazy as that sounds to us as lay people hearing it, what she's living, right, Stephanie, is real. This paranoia, these people chasing her is very, very real. Yes. Um, and and we can't begin to understand that we have to figure out a way that we can even begin to accept it because most of us can't. It's very hard. It's very hard. I I I just, you know, look at it like I I don't even know because I I can't I have a very difficult time accepting or understanding how that could be such a stark reality for people, you know. Uh you look out this you look out the window and there's snow on the ground. That's real. You look out the window and there's lava on the ground, we got we got problems. Uh Sarah, what were you gonna say?

SPEAKER_00 50:04

But this case is the the case that we were talking about in the beginning where it's gray. So at what point do we infringe on her rights because she is living in fear? And though again, it's heartbreaking to watch her live and have this quality of life. At what point does the intervention what at what point is the intervention justified? And I think that's what the team and the system and the courts, that's what they're struggling with on this case, because technically she's not an imminent danger to herself. The heart condition, I could be walking around with we all could be walking around with an untreated heart condition. There's plenty of people who walk around with untreated heart conditions that don't want medications. And so it's a very gray case because at what point do her rights get infringed upon because it makes us uncomfortable.

SPEAKER_02 51:00

And it's just and I think the grave disability angle is also gray. I might be able to make a good case that I feel right now that she's gravely disabled. I can go repeat that to somebody else and they can say to me, well, not really.

SPEAKER_03 51:14

Well, and that's why she does have the food.

SPEAKER_02 51:15

Maybe she's throwing it away constantly, but it's there.

SPEAKER_01 51:18

She has or even the system itself, right? I mean, how you know, she may not be putting herself at risk, but how many people is she putting at risk calling the police department 15 times a day to the point now where the resources are going out to somebody who may not need them. Now you have a whole system of care in terms of the emergency system saying, Hey, you're taxing our system now. So it is a fully loaded case.

SPEAKER_03 51:45

That is very true. And then you have the the boy who cried wolf issue, right? And you have the issue of I remember, you know, when we were little kids being taught you never pull a fire alarm because you're taking the cop the cops in the fire department away from a true emergency if you, you know, that's why it's illegal, frankly. And that's just that's all so true. Uh but I Sarah just made me think, you know, and I guess you guys actually do read the show sheets that I give you because, or maybe you don't, but what I wrote here is that what did I write it? At what point are we talking about liberty versus infringement of freedom? At what point are we as a society comfortable enough to go in there and say we have to protect you because we have to protect society? And I don't know, you know, I I just thought of another example of a guy, Sarah. I think you were my intern. For those who don't know, that's how Sarah and I met. She was actually an intern for me about 100 years ago. But I I had this case with a gentleman who was a diabetic, insulin-dependent diabetic, but man, he loves soda, and he would drink four liters of soda every day, every day, at least four liters, and it was killing him. It was absolutely killing him, and it was creating all this problem with med with his meds and his and medical issues, and we had to constantly respond to him because he was, you know, getting too much sugar, he was all out of balance. And ultimately, from what I can remember, do you remember that case, Sarah? From what I can remember, we ultimately said, Hey, it's this guy's one true pleasure in life. And you know, I don't think the judge ever and how can you sometimes you got to ask yourself, how are we supposed to enforce this? We don't want this guy to be drinking soda. I know he passed away now, but I'm still not gonna say his name. We don't want him to to to drink soda anymore, but I mean, you can walk out the door, find some coins on the ground and go find the soda anywhere. So some of it's really tough, some of it's really, really tough. And I and I really appreciate Stephanie's case because you're still right in the heat of it, Steph. You're still still going through it.

SPEAKER_02 54:01

Yeah, no end in sight there. So we'll see.

SPEAKER_03 54:04

No, and and you know, reasonable people can disagree, and I'm sure you are are on these on this case, or maybe you're not. Is everybody how how do you find the tenor of the team on this on this case? Does everybody seem to be in agreement? Are we just trying to to cross all of our T's and dot all of our I's and track basically re exhaust all of our resources? Or are there people saying, no, we gotta, you know, we're gonna pull the plug on this one?

SPEAKER_02 54:31

We're gonna no, I I really do think that we've gotten the team really aligned for her. You know, Demas is on board, the conservators on board, the visiting nurse services, the hospital. We all know the plan. We're all sticking to the plan. And I I gotta give it to them because we've been doing this now for probably about a year or two of this same plan, and nobody's strayed. But you know what? There's always hurdles. We go, we get to the hospital point where she's on the hospital, she she's admitted. We got her on the PEC, and now we have to do the commitment hearing. So now we're facing the judge, we're facing the attorney for responding, and we have to make a good case in that moment. And it's something that Sarah said, you know, a a little while ago about the moment in time. A lot of times the judges and the courts and the attorneys look at right this second, not the history, not the previous admissions, not all of this other stuff that's happening. How is she right this second in front of my eyes? And if we can't make that case of what we're seeing in the community when she's at her worst, you know, we don't always win. And I've had times where we have won, or like, oh, we're here, we got it. And then she starts to stabilize on the unit. The state bed wait lists are getting longer and longer, and she's going further down the list because she's not the sickest one. So then they say we can't continue to keep her. She goes back to the community and we start all over.

SPEAKER_03 55:53

Right. And unfortunately or fortunately, depending on your your perspective, some hearings are based in an acute moment of time. You know, a involuntary med hearing or an involuntary commitment hearing is based upon an acute moment of time. And as we discussed in our last, I believe it was our last episode, where we have a reasonable degree of predictability about what's going to happen with this particular woman. As as I hate you have to argue, oh, somebody's going to argue against you. Well, you don't know that for sure, right? And I said this in our last episode how much that how much I can't stand that, because we have enough records here to show over the course of a year that this woman has followed this pattern and et cetera. So we have a reasonable degree of predictability about what's going to happen. We just need to find the right time, the right resources. You know, the stars have to align all correctly. And our role collectively is to hang in there with folks until that time arrives. And I think that was Sarah's point when we talked about addiction. And that's, you know, a point that we have to make here and now. But it's daunting and it's exhausting for the clients, the patients, for the families who have to live through this every single day. And so my my parting question in all of this, and of course, I'm sure Sarah has extra comment to make or two, because that's what we we have to have Sarah's segment. Sarah's final thoughts. Sarah, what are your final thoughts?

SPEAKER_00 57:32

I just I can't stress enough that we as providers, as family members, have to keep trying and not lose hope and and continuing to work on engaging people in their own treatment. I think that's the main. And again, whether whether Stephanie's person, whether she ends up making it to the state hospital or not, I think we just have to continue to do the best that we can, you know, try to do a harm reduction kind of thing, and just continue to kind of roll with the resistance. That's my phrase, rolling with the resistance.

SPEAKER_03 58:03

Explain, explain to people who may not know what harm reduction is.

SPEAKER_00 58:07

So, well, in my idea of harm reduction is not giving up, continuing to try to be creative, continuing to stay the course, and continuing to provide all the options and treatment support resources that you can.

SPEAKER_03 58:23

So while trying to alleviate harm.

SPEAKER_00 58:27

Correct. Yeah.

SPEAKER_03 58:28

Right.

SPEAKER_00 58:29

Yeah.

SPEAKER_03 58:30

So let me ask you, I'm gonna ask all three of you point blank. I'll start with you, Sarah. Because I know this is one of the things that you love to say. So I'm gonna put it on you. If Anne was your sister, would you walk away from that door?

SPEAKER_00 58:47

Well, that's different. So I have the training of being a licensed clinical social worker. So if Anne was my sister, no, I probably would have been in the conservator mindset that the conservator did, and I would have had the police out and doing a wellness check. And I but as a lay family member, I you know, I don't I don't think I would have given up, but I think I would have needed to know what direction to go in and I would have needed support.

SPEAKER_03 59:14

Angela?

SPEAKER_01 59:18

I mean, taking my, you know, professionalism out of it, if I was a family member and you know, I have had family situations where there have been some challenging situations that we were in as a family. I don't know. I think I might be a little bit more with the family side. I was fearful, I didn't know what the resources were, and I probably would have tried to like they did to mitigate the risk the best I can. At least they weren't homeless. Like those, those are the the big ones as a as a family member that you're thinking about. Well, at least they're not homeless, and I at least I know where they are. And I I probably would fall into that trap a little bit because I didn't know what was going on. I didn't really know about mental illness. I definitely didn't know about resources. I didn't know, you know, what I don't know. And so when you're kind of in that mindset, you you just want to make sure somebody is safe and alive. And and then you deal with the emotional baggage, which again comes back to full circle, right? Like, how do we get the help for our family members to know that they don't have to sit there alone and not know what these resources are or the help that they can they can obtain. So coming from a different perspective of being a family member in it, that would be kind of where I would be.

SPEAKER_03 1:00:37

What do you think, Steph?

SPEAKER_02 1:00:39

I think myself as a professional now, but I as a family member maybe. I don't know. You know, I feel like certain family members give as much effort as they physically can. Some of them are able to recognize when they need to take a step back for their own well-being or they feel like they've done enough and they just can't handle it anymore right now. You know, I know that the the teams that the family members that work with us are grateful that they have other people to kind of fit like step in when they need a moment to themselves and there are people there, but to be a family member on your own, you know, it would probably just depend on the day. Am I willing to stand outside this door longer and keep banging or do, you know what, I tried, try again tomorrow and you know, I don't know.

SPEAKER_03 1:01:22

I I think that we sort of had this sliding slope, right? Of of, or I don't know which way you want to look at it. I I tend to, I was thinking the same thing you're you're getting at, Stephanie, because so many of our family members are burnt out. So many of them have been put through the ringer by their loved one due to the mental illness. And and let's not forget in this particular case, Anne was not being sweet about asking people to leave politely. She was being belligerent, she was being downright nasty. And, you know, how many punches in the arm are you going to take before you finally say, you know what? Okay, you want me to leave? Fine, I'm out of here. And people wash their hands to say, I'm done. And and there's that's not wrong either. Uh, you know, so I agree with Sarah, I agree with keeping the hope, I agree with Angela. Uh, it's it's sketchy. I agree with all three of you at the same time. You know, all things can be true at the same time in this matter. You know, it can be true that damn it, no, if that was my sister, I would be screaming from the mountaintops. And we've done that, but at the same time, I mean, I'm sure you guys have people in your family who you've chosen to walk away from from time to time. I know I do, and I have, just for your own self-preservation. Or I mean, you know, these are very real realistic situations where people are stealing from you, people are abusing you. Uh you gotta be you gotta be a saint to stick with it in some cases. So there's no right answer. There really isn't. And and whatever decision people who may be watching or listening to us make, that's their decision, that's their journey. And and and then we built supports around that too. Nothing is written in stone, nothing has to be permanent. We can modify, but we're gonna support. And and that's what the important message here is support choice to the extent that you can. If you can't, then we'll figure out a way to structure things around that decision because no choice is a choice as well. Right. So I thank you guys for being here as usual, and I thank everybody for listening. And I think this was another great discussion of a topic that will come up again, guarantee. I can't believe that we got this all in within an hour because this is such a heavy, weighty subject that I'm happy that we were able to talk about it as quickly and cover as much as we did. So thanks all three of you, and we will see you in the next one. Ann's story and all the stories that we discussed here today are a haunting reminder that autonomy is not a binary switch, it is a sliding scale, at the very least. We talk a lot about empowering clients, but empowerment is a hollow concept if the person holding the wheel has lost the ability to see the road. If we stand on a porch and watch someone starve because they told us to leave, we aren't respecting their dignity. We're simply avoiding the difficult, messy, legally complex work of intervention. True advocacy isn't just about saying yes to a client's demands, it's about having the courage to say no when the illness is the one doing the talking. Anne survived the renal failure, but she nearly paid for our respect, if you will, with her life. Next time we hide behind the phrase client choice, we need to ask ourselves, are we protecting their rights or are we just waiting for the problem to solve itself? The cracks are invisible only if we choose not to look. Let's keep holding it together.