My talk therapy – What’s Medical Safeguarding?

Part One

Katie: [00:00:00] You want me to start? 

Genia: [00:00:02] Sure.

 Okay.

Katie: [00:00:08] Um, like welcome to The Good Things.

Okay. Um, Hello, and welcome to The Good Things In Life podcast. Um, you might be wondering who I am. I am not Genia Stephen.  But I am a Genia Stephen fan girl, and I have been politely stalking her for the last year. And what I find is rare about The Good Things In Life podcast is that it combines,  the experience of a parent of a mother and a sister,  in disability inclusion with an extensive background and understanding of social role valorization, along with the idea of absolute inclusion in the community. And that is what brings people, the good things in life. So my background is, in storytelling, And I’ve worked for disability organizations since 2007.

Genia: [00:01:12] I’m just kidding. Yeah. Tell people your name. 

Katie: [00:01:14] Hi, I’m Katie Bachmeyer. 

Genia: [00:01:18] So the reason Katie is introducing this podcast episode is because as you may know, my sister has been living in the intensive care unit for the last few months.  And I’ve been spending most of my time with her and providing that support.

And in conversation with my friend and colleague Marilyn Dulmage a couple of months ago, she reminded me that part of what I aim to do with good things in life is create supportive communities. And that in fact, I have a supportive community. And so during this really difficult time, I should be reaching out to that community and asking for help.

And so, yeah. That’s what I’ve done is reach out to people, or be open when people reach out to me to offer help during this really challenging time in my family. And Katie is a storyteller. That’s what you do for a living. And Katie has offered to help me tell my story, I guess, through the next few podcast episodes.

And so this is our first one and we’re. We’re going to stumble along here. 

Katie: [00:02:30] Yeah. Yes. And, um, you know, my hope, is that in, you know, showing up to ask you questions and to ask you to share your story, that it is a form of support. I do think that storytelling is a, a space for healing and when it can be done in a way that is, um, not transactional, but it is, simply to witness the story and to hold space for the story that the person who is sharing can be in a space of healing and community.

So tell me, Genia tell the audience a little bit right now about,  the context. that we are speaking in, where are you right now in your, in your journey? 

Genia: [00:03:19] My sister was hospitalized in the b uh, middle of November and for the first close to six weeks because of the pandemic, the hospital would own it.

Well, first they wouldn’t commit to letting us provide a daily bedside support. They had visiting restrictions. So we had to first advocate for just to be allowed, to be seen as an essential disability support, as opposed to a visitor. And then they said, okay, well, the rule is, you know, one visitor, one essential, visitor for the duration of the admission. And so for the first five and a half close to six weeks, that was me, which means that I lived in the hospital. I have a little dorm sleep room in the hospital and, um, I lived there. Didn’t come home. And then finally the hospital was. You know, open to a discussion about the fact that the expectation is that my sister will be in intensive care, in re recovering for a year and that it was unrealistic to expect that a single person would be at the bedside, you know, 14 hours a day for a year. So they’ve opened it up to three people. So I’ve been able to come home on weekends since Christmas and and that’s kind of how it’s going. And so, you know, Monday to Friday or Sunday to Thursday, whatever the schedule is that week I go to the hospital and I live there during the week and I’m at my sister’s bedside, providing support and medical safeguarding and,  being with her during her days and sometimes nights.

Katie: [00:04:51] Yeah. And, if. Listeners haven’t checked out your podcast right before this one, to get a really full idea of what that looks like and to maybe get, um, more of just a foundational understanding of where you’re at that episode is, is the lesson I would do,  almost first go back and listen to that.

But, maybe you can transport us right now into the last couple of weeks in that scenario. What that has been like, um, what’s been going on, with your sister’s health. Hm. 

Genia: [00:05:25] Yeah. So, so most of the time that Kate that my sister has been admitted, she’s been really rolling with it. And she’s been in very good spirits, unreasonably good spirits. Like better than anyone could reasonably expect of somebody who is experiencing what she’s experiencing.

And simultaneous. And then in the last couple of weeks, she’s, she’s just started to struggle. You know, she wants to, she’s asking to go home. She keeps asking or telling us to get her out of here. Um, and you know, she’s talking about all the things that she wants to do and the people that she wants to see.

So she’s struggling and simultaneously, it’s been months now that I’ve been doing this and so it’s hard at home. You know, it’s hard for my kids and hard for my spouse and hard for me.

And I’m, I’m also struggling with get me outta here. Like this is, you know, this is, this is really hard. And some of the things that have been. I mean, there’s sort of two aspects of it. I think that are really significant. One is the medical safeguarding and the medical advocacy piece, you know, helping. Just observing, watching for errors, asking questions, you know, helping Kate to be understood by the staff and helping the staff to be understood by Kate.

And then there’s this other aspect of kind of living in a fishbowl, uh, you know, where essentially, you know, people come up and tap on the glass all the time and there’s no, it’s isolating and yet there is no privacy. Nothing happens according to a schedule that is of Kate’s design. Or is, you know, sensitive to what Kate might want or me. You know, what, what I might need or want. The, the lack of sort of any kind of, any of the things you think of if, if I say to you, what does home mean to you? And the list of things that you might tell me about what home means, you know, none of that exists. And I think when. When people are in a hospital for a short period of time, you know, they’re really acutely ill and then they get better and then they go home.

It’s not that these things are not relevant for those short stays, but certainly when people are living in a service for a long period of time, I think these discordant aspects of, you know, living in a service as opposed to living in your home, start to build up and become really significant and really hard to cope with.

 Katie: [00:08:33] I was wondering if you could tell me who Kate is. Can you tell me more about your sister?

Genia: [00:08:42] So Kate is, um, 41.  She’s the youngest of the sisters in our family. Um, and yet in some ways, you know, she’s the bossiest. Kate lives in her own apartment with her dog, Kate’s always been, you know, a huge fan of having pets and, you know, having dogs.

And she’s always had always been a pet lover. She up until, up until recently, a couple of years ago, she had, um, a spinal surgery and she hasn’t been able to get riding again. But she’s, um, still is, uh, very much a horseback rider as far as her love of all things equestrian. Kate is, it has a really sort of slapstick sense of humor.

So she’s very appreciative of, uh, other people who are kind of fun, loving, which is when I think of the very sad bits of me being the person who’s spending the most time with Kate, because we joke all the time about the fact that I’m the least fun sister. And, uh, she’s very. I don’t know if conscientious would be the word, but very concerned about the well being of the people that she cares about.

You know, like she, she checks, checks in frequently to make sure that everybody is okay. She loves books. And having people read her books or listening to audio books. Much like me she is not hugely into cooking, but very much into hosting. So she really enjoys being a host in her home. And in the community, you know, like different roles where she’s able to be, um, kind of in that host role. And she’s also one of the, I don’t know, maybe resilient, most resilient people that, that I know. Kate has had, you know, this, this illness that she has right now, or that she’s recovering from right now.

When I describe it, what I talk about, she has, um, a condition called Guillain-Barre syndrome, which is where your, you get a mild harmless virus and then your immune system starts attacking your nerves and leads to paralysis. So when I’m describing this, I often say it’s like one of those struck by lightning auto immune conditions. You know what I mean? Like it just comes out of nowhere. There’s no, you know, it’s completely random. And it feels like this is just the last in a long list of struck by lightning kinds of things that Kate has had to deal with in her life. And, um, often the healthcare professionals are saying, “Oh, I don’t know whether or not she’ll, you know, whether she’ll come back from this.” And, and she always just does. She’s just like, all right, let’s, let’s go. You know, we’ve got life to lead and things to do.  So. Yeah. So that’s some of who she is. 

Katie: [00:12:11] Yeah. I mean, I love how you said that you’re the least fun sister and that she stuck with you now, and that that’s kind of your relationship.

Can you tell me a little bit more about who you are to your sister?

Genia: [00:12:23] Um, who am I to my sister? 

Katie: [00:12:28] Probably not something you had to think about. What if she were to speak for you? What do you think she would say.

Genia: [00:12:36] Oh gosh. Okay. So I’m going to say that I, I’m going to answer the question from like, purely from that sort of like sister’s relationship. You know what I mean? As opposed to like a more, um, mature, refined kind of response. So I think that Kate would probably say,  Genia is my little sister, because even though she’s younger than me, she is, uh, three inches taller than me.

So as soon as she got taller than me, she started calling me her little sister. And uh, she would, what else so Kate say about me. I don’t know how Kate would sort of describe me or what she would say about me. I can tell you some of the things that she likes and doesn’t like about me.

You know, we used to have a long standing conflict about taking each other’s clothes, um, which has mostly resolved itself now. And, you know, I think she appreciates, you know, shopping in my closet. And, um, not so much when I shop in hers. Kate in, I think takes a sort of twisted amount of pleasure when I am kind of losing it on her behalf in the hospital.

She thinks that’s a little bit funny when I’m, you know, going off on someone, um, which I don’t recommend by the way. That’s not, that’s not the best way to approach medical safeguarding . I think as I said, I think she would, she would probably say that, uh, you know, I’m the least fun sister. Yeah. I don’t know Katie. That’s a really good question. 

Katie: [00:14:19] Yeah. It’s just helpful to hear, you know, the, the dynamics, because you know, all sisters are pretty much the same and very different at the same time like that. It just coming from a family of, of three girls, myself and knowing what it’s like to have sisters and just being, um, being the little sister myself.

 I just know, you know, what that relationship entails and there’s yeah, the stealing of the clothes, the intimacy, the, the fighting and the drawing back to each other every time. And, and just, um, this sort of irreplaceable connection of somebody knowing your story, your whole life. And through thick and thin kind of showing up, and that is what you’re doing for her right now.

I’m wondering, you know, when you were talking about, having to go to bat for her in the hospital, and if you could share a little bit more about what that means to you and what that interaction is like. While I think it, it’s true, probably losing it on a doctor, a nurse or something isn’t recommended, it also is certainly a sign of love and a frustration with the system, um, that you are kind of forced to be in, in the situation. So if you could, if you could express to the audience, like more of why are you there? You know, what are the threats? if you’re not. Yeah. 

Yeah. 

Genia: [00:15:59] So I think there’s a few, there’s a few reasons to have somebody preferably a known person at the bedside. And this is true, I think for every, everybody but most particularly for people who are vulnerable because of a number of different reasons. So, um, one of the most significant being, you know, is the person part of a group of people who are devalued in our society. So, you know, people with disabilities, in society in general are not seen as highly valuable in the healthcare system, there are considerable considerable assumptions about people’s quality of life. You know, in Canada we just expanded our medical assistance in dying laws. For example, you know, and, you know, just this idea that people with disabilities aren’t worth the resources and the investment that they, their lives are, you know, less valuable, um, of lower quality.

Um, there was a British survey that was done and more than 50% of doctors acknowledged the people with disabilities get inequitable healthcare. And in hospitals, often people are assumed their illnesses are acquainted with their disability. So people think that people are likely to think that, you know, different symptoms or aspects of whatever they’re in the hospital for is actually related to their disability.

And sometimes, that sometimes that can be confusion. But, um, often it is related to just this assumption that people with disabilities have all kinds of other kinds of anomalies that are acceptable for them.  Elders or another group of people that would be very, uh, that are very at risk in the hospital they’re, you know, seen that they, you know, aren’t contributing that their lives are of low quality.

Um, people who are elders are often, symptoms are often dismissed as dementia. Even when that’s not the case, there’s low expectations for survival. And then people with disabilities as well maybe vulnerable because of communication challenges, you know, they’re unable to make themselves easily understood by people who don’t know them, who may not understand their communication.

Uh, people with intellectual disabilities may struggle to understand what the health team is saying to them. What it all means, particularly if people on the health team aren’t great at using plain language to describe their care plans and procedures. People, maybe at more risk of things like physical and medication restraints, particularly if they have, uh, behaviors that are difficult for other people to manage or to be around or people find unpleasant.

So those are some of the reasons. 

Katie: [00:19:11] Yeah. And it makes me think back to the previous episode and how you mentioned that, there is this assumption that your sister’s current state of health is more related to her disability than her medical crisis. And I’ve heard that, stated in other ways, uh, as the soft bigotry of low expectations, that this idea that your expected baseline for health is, is lower because you have a disability or your expected baseline for communication or understanding is lower because you have a disability in that soft bigotry. Um, and what that does to a person over time. And you, um, sort of express that when you talked about how, she was being asked to give answers to an assessment, and you said that she had been asked to give assessments for the benefit of others, her whole life. And she’s pretty much over it at this point.

There’s a lot of asks from a person with a disability to be there to sort of educate somebody. Um, but at the same time, there’s very low expectations that they can really add anything of value beyond their disability experience to the community. Yeah. So I’m wondering if you can explain more of like what it is to be a medical safeguard just in like the plaintiff’s definition of terms. You know, you, you have definitely illuminated it, but I think what would that, what would that be in terms like in a definition, medical safeguarding. 

Genia: [00:20:57] Yeah, so medical safeguarding, well, I can talk about it in the, in terms of like a job description that might be one of the easiest ways to do, to do it.

I mean, the, the purpose of a medical safeguard is to have somebody at the bedside who can help improve the outcomes of the per of the patient. And protect them from possible intentional or unintentional harm during their hospital stay. The job description is to be present ideally continuously, to observe what’s going on and be mindful about what’s going on around the patient. To observe for errors, both in areas and what happens at the sort of healthcare provider level and also errors in you know, technical things. Like twisted lines and those kinds of things. Although the error of healthcare providers is more likely to be significant to ask a lot of questions, as a way of ensuring that everybody is on the same page, uh, ensuring that you understand, and therefore can be a better advocate. 

But also to ask questions in order to draw forth from the staff information that can help identify inconsistencies and that kind of thing. Dr. Wolfensberger referred to this as maintaining,  an information gathering stance. And he has a book, which like all of Dr. Wolfensberger, his books have a pretty long name, protecting the lives of vulnerable patients in hospital, I think is the short form, but we can link to it in the show notes, for sure.

 So presence, observation, questioning, caring. Meaning just augmenting the care that’s provided in hospital. You know, the nurses in, I would say pretty much any hospital in the world these days, perhaps, unless you’re paying for, for, you know, high-end private nursing or something. Um, the nurses don’t have the time to provide the level of care to every patient that they would like to, it’s not the nurse’s fault.

And so patients wait and they are often underserved you know. Somebody who requires some assistance to eat, for example, will likely become undernourished if they stay in the hospital for any length of time. Somebody who requires assistance to change position may develop pressure sores.

If there’s not somebody around to help shift their body around more frequently than the nurses can provide. Those are just two examples, you know, wiping a brow, um, holding a hand, you know, some of the care that’s. You know, not medical care,  and not even health related care, like helping somebody to eat or change position but just to care, you know, and to be a caring presence.

And then the other part of the job description is to be a, what I call the Public Relations Representative. And so that is helping the person, the patient to be seen in a positive light by the staff, and to build their relationship with the healthcare staff. To help interpret the patient to the staff in a positive way. To build fondness in positive regard, essentially, you know, regardless of how difficult or unlikable a person is, they should get the same health care as somebody who, you know, everybody just thinks is fantastic. That the bottom line is that humans don’t like spending time with people they don’t like. So you really want to, you really want to help to elevate the relationship between the health care staff and the patient. And you also want to help the staff to see the patient as highly valuable and worth the investment. Because that helps to compensate for the devaluation that is, you know, ubiquitous in our society. 

Katie: [24:51] That was just really beautifully outlined. And so clear to me the importance and what’s at stake for somebody who doesn’t have a medical safeguard. And the moment when you checked Kate and to the hospital and that panic of the nurse saying, and real clear, you know, measure tone sounds like we’ll take care of her.

And you’re saying, but how, how, how will you know, and this idea of interpretation. Being so critical to what it means to get care in a hospital in a way that isn’t, having to start from ground zero. And how long would it take for them to really understand Kate and who she is and what she’s saying and how her body lies and what she needs if they didn’t have you there.

And that essential aspect of it is, so clear to me. The question that it brings up to me as well as this idea of the medical staff. And you said a number of times, you know, that this is and a necessity to have the ICU. It is a necessity to have staff who understand how to take care of somebody in the ICU.

And that’s part of why they come in to give assessments. That’s why they need to do things in a systematic way. Um, that’s why the hospital is run very much in a, an organized fashion because  that’s the, the central care that they can provide medically. And it just opens the question for me around if there is a design that would make sense to couple this care that you’re able to provide Kate with the medical staff in an, in a more ideal setting, what would that look like for you?

Because you’re saying that you’re, you know, a month and a half in and you have a year to go, you have. I don’t know, 10 months ago and you’re feeling burnout. And what would make it easier for you to be able to show up in this way, as I’m sure the medical staff see you as essential at this point, that they wouldn’t want you to, I guess I should ask that as a question.

Do you think that they see you as essential at this point? Do you think that they would try and make things more hospitable for you if you asked or what would the solution there be? 

Genia: [27:24] So, yeah, so w at the time that we’re recording this, we’re now like four months in. And so there’s a couple of things that you’ve brought up.

So I think the question of do the staff see us as essential, it depends on the staff. I think that in general, healthcare providers are very sensitive to the fact that it’s critical for patients to have support from loved ones, regardless of whether or not they have a disability. And I think that it is a source of great pain and stress for healthcare providers that the pandemic has put a limit to how patients are supported by loved ones in the hospital.

I think that often healthcare providers, nurses in particular are happy that we’re we’re there and we’re able to provide Kate with support. One of the things that’s been the most difficult though to get communicated, is our role there as, as, uh, specifically, uh, not to be supportive, but to be as disability support, around communication. You know, basically as an interpreter to help modify assessments and provide as an essential, essentially as an accessibility intervention, you know, like we’re, we’re there to make healthcare accessible. Sometimes an ideally the, the role is also to help the person, the patient to be as actively involved in their own health care. As possible. And so, you know, if somebody is unconscious in the hospital, then obviously they’re not going to be very participatory, you know, but you know, when they’re not, what does, you know, what does consent look like and how and shared decision-making around consent?

How do you modify assessments, to make sure that they’re relevant to the patient? So I’m not, I don’t think that that piece is something that the S the healthcare team sees as essential or even sees. I don’t think they see it. 

Katie: [29:41] Do you think it’s because they don’t see the difference between a family member showing up for their loved one who doesn’t have a disability and a family member showing up for somebody who does have a disability.Is that the difference there that they’re really not clear on how, Those mechanics really need.

Genia: [30:00] I think that, so I’m, we’re getting into the realm of like me speaking on people’s B P you know, trying to kind of think what’s in their minds and that’s, that’s tricky. So just recognizing that I could be way off base on this because I’m not in people’s minds.

I think people see the value and the importance of having a person there to be supportive. I don’t necessarily think it’s not been my experience, particularly during this admission, which to be honest has been so intense that it’s hard to think, I mean, it’s not, this is not my first rodeo. It’s not like I’ve, you know, this is the first time I’ve done this, but it’s hard to think outside of what’s happening right now.

So that’s mostly what I’m talking about at the moment. I don’t think that the staff see our role as intersecting in any way or impacting them and their behavior. And that, so I think there’s a significant disconnect there. As far as what would make it easier? Um, I mean, I think, well, I don’t think I know the, the pandemic and the restrictions on the number of people who can be there and how support can get organized is, uh, is probably by far the most significant challenge this time around. One of the things that it has been a tremendous strain is those moments where I feel like the nurses and I are set up for likely conflict, because that role is not well understood and it hasn’t been communicated to the nurse. So the nurse comes in she’s exceptionally competent or he is exceptionally competent kind, considerate, you know, wants to do a good job, take good care of the patient. But they come in and they just do the things the way they do the things. And then I’m in a position of having to sort of interrupt or tell them to stop. As opposed to an arrangement where people were clear walking into the room that, that this was a collaboration. Um, and so, you know, we’ve been, I’ve been working with the hospital, you know, steps along the journey since we got there. And we finally, the, the nurses, the, um, unit manager sent. You know, it’s just put a ton of work into this, looking up all the different rules and regulations about whether or not we can assist with things like helping my sister rollover.

Like for my end, it’s just ridiculous. Right. But yeah. Whatever it is, it’s a big complex system with lots of rules and considerable concern around liability. Right? So anyway, she’s done all of this work and she produced this document to let the nurses know that we could be, you know, that we’re there to be supportive and we can be, these are the things that we’re allowed to do.

And I really appreciated that, but I went back to her and said, but there’s nothing in here about disability, accommodation modification, interpretation, interpretation of consent, you know, any of those kinds of things. And, and that’s actually the biggest problem. 

Katie: [00:33:43] Yeah. And I wonder if, you know, hearing that people think, Oh, There they go banging that drum again, these disability advocates always wanting that, you know, word accommodation. And they’re always wanting something around accessibility and not understanding the place that it’s coming from is in this genuine spirit of collaboration like you had said.

Genia: [00:34:10] Yeah. I, so the reception that I’ve had from the unit manager has been largely supportive and what she said when I said, okay, but where’s all the piece around accommodation and the role there of this person, she said, this is actually new territory for us. Do you want to send me something?

You know? And so I don’t, I don’t feel like the institution’s response has been, Oh, geez. Here’s you know, those disability advocates beating the drum again, that’s not been my experience, but I do feel like I’m caught in a bit of a Groundhog’s Day. Kind of the movie, you know, do you know what I’m talking about?

Bill Murray movies where I wake up every day and it’s the same, it’s the same thing. 

Katie: [00:35:07] yeah, I think it’s beautiful to hear, like, I guess maybe I’m speaking to fears of. You know, other people, you know, in this situation wondering like how much can I say, how much can I push? How much can I ask for and worrying that you might come across as you know, but also at the same time who really gives a heck it’s, your sister, and this is what you need to do to show up for her.

And,  so balancing the conflict within the interpersonal way of needing these people who are caring people for your sister to show up and continue showing up in a way that feels positive and collaborative. And, but also being like, but Hey, this isn’t right. And you gotta keep you how to fix this. Like, wow, you put together this whole huge document, that’s amazing. But you missed this thing, you missed the boat here, and I think it’s really powerful to hear you say that that’s that is actually, that’s a, I think a critical part probably of this, of this medical safeguarding. Is like, you know, continuing to show up and continuing to ask questions and continuing to ask for more.

And do you think that , that grind. As partially, um, what is wearing on you or does that not feel like heavy at all? Like, because they’re responding really well. It sounds like. And, 

Genia: [00:36:29] Um, I think that, I mean really like the part, the biggest issue around the grind for me is just, it’s been a long time and it’s and I spend most of my time living in a hospital. Yeah. So when you take that piece away, which outside of a pandemic and with a, you know, a small group of people who could provide that’s safeguarding, which not everybody has. Like I’m for me, if, if we weren’t living in a pandemic, then this, my sister support would look very different because while we don’t have a ton of people who would, could provide it, um, there is at least a small handful of people, and that’s what we’ve done in the past.

Not everybody would have that many people would have perhaps a similar experience to what I’ve had, just because they don’t have other people in their lives that could participate so. 

Katie: [00:37:29] I would love to do another episode on that actually specifically, too, to just like, ask you questions about that small handful of people who are showing up right now that are the local connections that you have that are helping out.

But yeah, 

Genia: [00:37:41] yeah, yeah. So, so if you take away the grind of just, you know, living in a service, so much of the time, really, I think it’s the, the most difficult thing is the disconnect between, not having a mutual understanding of what the role is and so having that kind of setup for conflict. And then the other people, these two, it is, or another piece to it, I should say is that there’s, um,

The whole idea of sort of trauma informed care or modification when somebody refuses consent and sort of the implications of being in a service, regardless of like whether it’s healthcare or residential living in a service for a long period of time. And the impact on the person of these constant micro aggressions.

So for example, twice a day, at least now it was more frequent before. But to twice a day, nurses come in to do a neurological assessment, which is appropriate, right? Like the, she requires a neurological assessment. Right. But as soon as you put your hands towards my sister’s eyes, she clenches them shut and she can’t not do it.

It’s just like she can’t not do it. And if you try and pull, so people are checking her pupils, right? Checking her eyes. That’s what I’m talking about. So they will stick their thumbs in her eyes and try and pull her eyelids open. And she’s scrunching them shut, Oh gosh. Now there are ways of working around this, but if you can imagine twice a day. So, I mean, for, for those of us who find it relatively easy to force our, like, keep our eyes open when somebody puts a flashlight in our eyes, which actually my sister does really well with.  You know, maybe not a big deal, but if you can imagine, not being able to, like, if you went to the eye doctor, for example, twice a day, and they were like shining bright lights in your eyes.

And then when you didn’t do it, when you weren’t able to keep your eyes open, every time you blinked or something, they put their thumbs in your eyes and forced your eyelids open while telling you to open your eyes and chastising you. 

Um, and four months of that, 

Yeah. Yeah. And, and the, there will be more, right.

There’ll be more, many more months ahead of her. So when, you know, that’s just one example or like,  taking a temperature and putting a thermometer probe, like forcing a thrown up thermometer probe into her mouth, through her teeth, and then telling her not to bite on it. Creek, it just forced this into my mouth.

Um, you know, like, so these microaggressions, which don’t come from a place of aggression. Right. Um, but the cumulative experience of these things over time is, you know, tremendous, So those kinds of the, that I think is the microaggressions. I feel like are another aspect of this that is really, really difficult.

Katie: [00:41:18] You had also mentioned this idea of a lack of privacy and a lack of control as a medical safeguard, that you don’t get this opportunity to shut the door and dim the lights and have a quiet moment with Kate if she’s struggling. There comes the janitorial service, you know, sweeping up because it’s COVID and  they need to clean in the room or your comes the resident who is learning and needs to learn this in order to help the next patient.

But right in the moment, when you, you both need a little bit of privacy and a little bit more control of your environment, but you don’t get that. 

Genia: [00:42:02] Yeah. Yeah. So I think that the, so the lack of control in moments I think is really hard on my sister. The lack of privacy I think is harder on me.

And I think that’s because, she requires support, I mean, maybe it’s like the microaggressions where it still continues to accumulate over time. But Kate is, um, has grown a thicker skin than I have, I think is maybe the most appropriate way to say it. It’s not that it’s not significant to her.

 But she has had people, again, providing essential services, right? Like support she needs help she need. But still like the, the lack of privacy is still, you know, a significant stressor. So she’s developed a thicker skin for it than I have. And I think Kate is also a little more extroverted than I am.

But yeah, so the, the interruptions are regular and not related necessarily to what Kate needs most in that moment. So it’s really, I mean, we tried to record this, we tried to record this the other day while I was in Kate’s room and it was just completely unrealistic. Um, you know, the, the background noise, but then just the people coming in, like over and over and over again.

And you can’t carry out normal life functions in those environments either. Right.  Which is related to privacy, um, also related to control and autonomy. So you just, you can’t really make any decisions. In this context. So do you want to rollover cause you’re uncomfortable? Well, you have to wait for two people to be available to do so. You want to make a phone call? Well, you can’t really do that because, or have a private conversation. You know, we can’t really do that because somebody is going to be there.

You want to. I don’t know, like, it’s just any of it from my own experience. I can give you examples. Like, here’s an example, Um, so Kate’s paralyzed, so she can’t participate in this right now, but, um, or do it for herself or anything, but, so I help Kate brush her teeth. You know, I’m like, Kate, do you want to brush your teeth? And sometimes she’ll say like, yes, now is good. And other times she’ll say, no, it’s not.

 But the staff will keep coming in and say, and you know, be like, well, Kate, you need to brush your teeth. Now it’s written in the orders that at two o’clock you have mouth care. You know, and so if I happen to not be there at two o’clock and I haven’t told them specifically that we, you know, Kate’s already taken care of it, then they will come in and they will brush your teeth. Whether she wants to or not, because it’s two o’clock. You know, um, there are things like, this particular room has a glass front and then a curtain. So you can close the door, but it’s a glass door. And then there’s a curtain that comes across. You can pull the curtain, but people will walk in anyway and only some people will pause at the curtain and ask if it’s okay. When you’re upset, people are watching you, you know, if I’m climbing into bed, to have a cuddle or read, uh, with my sister or maybe we’re going to make a video call together or whatever, and I’m climbing in. I don’t know if anybody has ever tried climbing into a hospital bed, with the rails up and, you know, an adult, another adult already in the bed or not, but it’s not graceful, neither is getting out and, you know, the sort of button, but out kind of view is just like, um, it’s there. So there’s just lots of little tiny things that are just like some things that we make assumptions about around our lives are, you know, the home lives that just doesn’t doesn’t exist.

And the healthcare staff are not thinking about somebody is living there. You know, they see this very much as their workplace and their patient, right. Who requires healthcare, but there’s no consideration that people are living there that when they walk in that door, you know, for better or for worse, they’re walking into somebody’s home or as close as the person can get for now.

Katie: [00:47:03] Yeah. I think there’s something about what you said that’s making me reflect on the ways that you’ve found home, you know, together in the hospital. What, what ways you and Kate have managed to recreate some semblance of what it feels like to be home and whether that is climbing into bed together to snuggle.

Not a, obviously a total recreation, but it is like these little kind of attempts at some comfort. And if you were to share with anybody listening, what are some ways, and maybe you say, you know, screw off there isn’t any way to really recreate it. But what would it, would there be any advice or tips of things that people can do who are preparing to be a medical safeguard or who are in the hospital currently needing a medical safeguard to make it feel better to be there?

Genia: [00:48:11] Yeah. So, I mean, when you’re asking a question, I was like shaking my head and like. No, there’s nothing that that’s not entirely true, but I think the difference between making these efforts and not making these efforts in some regards is, like, would it be worse if no efforts were made? Yes. Do the efforts result in significant impact?

I don’t really think so to be honest. So, we’ve been doing things like, You know, decorating for the season for holidays coming up and, trying to make the room slightly more functional. So there’s, you know, space to store some things that Kate likes to have around and like stab available to her and those kinds of things.

They’re not right now because it’s not super practical for her, but often, If somebody is in the hospital, you can help them to be wearing their own clothes, for example. So those things can be helpful. I think that, you know, you can make it really pretty and high-tech, but it doesn’t change the fact that it’s not the same.

 Like you can, you can dress it up, but you, but it’s still not the same one when fundamentally it doesn’t doesn’t, um, achieve any of the things that like, again, if anybody wrote a list of what does home mean to you? This is not going to check off anything on that list.

I think that the thing that can be done and should be done that does have a really powerful, positive impact is that interpersonal building interpersonal identification and, and relationship and positive regard for the patient. So, some of the things that we’ve done, you know, I had mentioned that Kate has a really great sense of humor and she really enjoys other people. And, I, you know, pretty extroverted.  So we started a joke of the day.

So every day we write a joke on a piece of printer paper, it’s not fancy. And we post it, as I said, her, her room, the front of her room is a wall of glass. So we posted there and we always put at the bottom, have a joke? Come and tell me. And so over time, this is built this like everybody on the unit knows that Kate loves jokes. And so people will come and they will tell her jokes or they’ll tell her a joke and then they will have written it out and they’ll post it on the board as well , or posted on the windows as well.

We have pictures of Kate outside of the hospital in areas of the, her room that are really easy to see when, when the staff are in the room. And we’ve got a poster board with that talks about who Kate is and what she, you know, what she loves and her interests. And so that there are kind of quick guides to understanding who this patient is as a whole person. Amazing. And what their life is like. 

Katie: [00:51:16] There’s so much ingenuity in what you just said. And I, all I can think then is not home, but human.

Genia: [00:51:26] Yeah. Human connection. 

 I think if everybody were doing these, making these kinds of efforts for every patient in the hospital, that would be wonderful.

But our healthcare system for the most part, is not designed to allow healthcare providers to see and treat a whole person much of the time and that’s not the healthcare providers fault. So I think it’s unfair and unrealistic to expect that in a utopian reality that healthcare providers would change the way they interact with patients. Such that you wouldn’t need, it would no longer be required to have continuous bedside presence for vulnerable patients, you know?

 Part of the reason it’s not the whole thing, but part of the reason why it’s really important to have somebody at the bedside is, is because just health care providers can only do so much with the way the current system is structured. And it’s an incredibly complex system. Like healthcare is a complex, incredibly complex system, which means it’s going to be incredibly prone to error. And in fact, hospitals have whole departments that are focused on reducing the rate of error in their institutions.

Katie: [00:53:11] Would you all have already experienced in your time there that, you know, Kate had an.  Um, medication error. Yeah, medication error. 

Genia: [00:53:20] So yeah, there have been. Dozens and dozens and dozens and dozens of errors, I would say hundreds, but I haven’t really kept track, so I don’t want to exaggerate, but, and not all of them nearly as significant as that medication error for sure.

But, um, medication errors and communication errors that lead to tiny up to life-threatening harm are the two most common causes of error in healthcare. So. You know, that, that piece, like, that’s a, that’s a very significant part of why bedside presence is really important, you know, there’s this human aspect of it,  you know, shoring up the patient, you know, being there and seeing that person as a whole person and, you know, communication and all of those whole person things.

But then this other piece of it is that. Even with the best intention, healthcare providers and, you know, where everybody was making these efforts  to increase interpersonal identification. You’re still gonna end up with this massive  risk of error that’s going to be significant. 

Katie: [00:54:31] Yeah. And I, I really love how you, how respectful you are of the medical staff and not creating this. Isn’t an us and them. This isn’t a, you know, I know how to do it. They’re doing it wrong. They should do it like me. It’s more of a collaboration and the collaboration is making for the whole person to be attended to.

And one can’t be without the other one, can’t also be replaced by the system. You can’t train medical staff. I think this is what you’re saying. You can’t train medical staff to be medical safeguards for somebody, because part of the point maybe is that. Medical safeguards really know and understand the person well and better than just coming in and being versed on who that person is.

Genia: [00:55:16] So yes, ideally the people that are acting as a medical safeguard or advocate for the person know the person really well, because obviously that’s going to make them much more effective in many ways than somebody who doesn’t know the person. But that job description that I described being present, observing, asking questions.

Providing care and, um, acting as a PR representative, you don’t need to actually know the person intimately well in order to carry that out. And the reason that it’s still effective is because you’re very likely to catch errors. You’re very likely to augment the care that’s provided. So malnourishment or undernourishment being a perfect example.

And you’re going to have, build that interpersonal identification between the patient and the staff that is then going to help the staff to do a better job as well. Even if you don’t know the person very well, but you know, some things about the person. You know, when I teach medical advocacy, I have a guide, when I teach it that I give people that helps someone create, you know, a plan around medical advocacy. And that includes things like, quick talking points, things about the person, their interests, you know, how to understand them. That’s not a substitute for having somebody who knows the person really well.

Like it’s not an equal substitute, but it certainly is, is still really effective. Even if the person doesn’t know the person. Well, I’ve done that for many people that I don’t know very well. 

Katie: [00:56:54] Oh man. So I’m learning so much from this and it just, it brings it back to, what you said Wolf Wolfensberger said, which is maintaining an information, gathering stance. The stance is, is almost the role is like, it’s almost like, and I, I want to say like you are a midwife, right? Is it similar to just being like a midwife and showing up in that stance? Like as a midwife, you have a set of job description duties that you have to help birth a baby. And I know that those have, I don’t want to make the correlation hand in hand, but, um, yeah. From my experience as a, somebody who has birthed two babies un-medicated and one baby medicated. And knowing that difference in being in a natural birthing center versus being in a hospital setting, and those very two different dimensions of reality. One was with the midwife one was with a doctor and both were able to help me give birth. You know, both settings, but the different stances that I was treated in in these natural settings versus a medical setting. I don’t know if I’m making this correlation a leap, but it feels very much like a medical safeguard  in some ways has that alternative way of showing up for a patient like a midwife can. 

Genia: [57:48] Um, okay. Well, there’s several things. There’s I get it. I get it. Most of what you’re saying, I’m like, nah, I don’t, I don’t think so. But I tried it. I’m going to try and get to this 

Katie:[58:15] Just by the way, this is like most of our conversations together. You need to be in like, you have it now. 

Genia: [00:58:36] Okay. So. I’m, I’m a healthcare provider. I provide clinical care in hospital so coming from that perspective, and then also coming from this medical safeguarding perspective. As a midwife,  you know, I have some tenants that guide my care, you know, there’s, um, informed choice, continuity of care, choice of birthplace. This is Ontario based. And then there are also clinical clinical guidelines that guide my care. And much of those, the purpose of those clinical guidelines is to keep you safe.

But if a midwife is providing care, to a patient who’s devalued in society in particular, and in general. Then having somebody with the patient who can be fully present, observe question, provide care that I can’t provide and help me to understand the patient so that I connect more deeply with them. That role is still important and valuable and impactful. So this is not about medical model. Although I have said that our current model is set up for not being able to see the whole person. So, but, this is not about medical model versus sort of holistic model. 

Katie: [01:00:09] That was just a midwife and 

Genia: [01:00:11] the, yeah, like your examples of sort of like setting a dichotomy and that’s not what this is. The, the, um, like you can change the system and that might be really valuable and helpful.

And certainly lots of people within healthcare are working on healthcare reform for all kinds, like to all kinds of benefit. And we’ve seen lots of changes over the last, several decades that have made healthcare, you know, more patient-centered more family centered, you know, consent is understood for a better informed, you know, information shared, like there’s been all kinds of benefits. But the bottom line is that if people are devalued, particularly if people are devalued in our society, then they’re going to be vulnerable and so having somebody who’s filling, you know, the five aspects of the job description of a medical safeguard is likely to make their care safer, decrease harm that’s caused to them and improve outcomes. And support less dramatic experience for the patient. 

Katie: [01:01:20] I absolutely love that, distinction and it’s really clear to me now it reminds me of what’s going on in Cincinnati, where we have a very high mortality rate, infant mortality rate among black women. And  there’s a, a clear understanding of my mind now as to why it’s important to support somebody with a disability in a hospital setting. And to bring that, again, going back to the low expectation, the soft bigotry of low expectation to have somebody there with the high expectations and to have somebody there, who is advocating in that sense.

That’s the whole person aspect of it. And that’s so clear to me now it makes a lot of sense. And, um, you know, to, to safeguard somebody against bigotry is a pretty huge role and it’s very a unique, 

Genia: [01:02:11] Yeah. And it’s also, it’s also the disproportional harm. So when you’re talking about outcomes, you’re talking about infant mortality, but maternal mortality is higher in women than it is in white women.

And it’s not just what happens to people in the hospital. It’s also what has happened to people leading up to when they enter the hospital. Yes. And so the, the role of a bedside uh, advocate for in a hospital inpatient is obviously for what happens inside the hospital, during that time. You could certainly expand that.

And I think people should consider expanding that across the health, you know, the healthcare world, you know, people people’s involvement in healthcare, access to healthcare, you know, how their lives intersect with healthcare, But my point around disproportionate harm is thinking,  there’s two reasons why I’m saying, um. It’s good for everybody, but especially people who are devalued one is because devaluation is going to manifest itself during that hospitalization.

So they’re more at risk compared to somebody who is not devalued in society. The other reason is that if somebody is devalued in society, then very likely they’ve experienced in equitable healthcare and the impacts of inequitable healthcare before, meaning what happens in the hospital could disproportionately harm them because they’re already potentially more physically,  mentally and even perhaps spiritually harmed coming into it, right? Like they’re, they’re, they’ve been impacted negatively coming in. So for example, um, 

Katie: [01:04:07] this, this is the trauma informed care that you’re speaking to in some ways 

Genia: [01:04:10] It’s the it’s yes. Like there’s the trauma informed care and recognizing the impact that that has on people, psychologically and emotionally. But there’s also just the, the physical aspects of this.

So, so for example,  let’s I’m going to, I’m going to make something up. So let’s say that somebody has diabetes, but they haven’t had appropriate access and quality access to managing their diabetes because of their racial identity or disability or age. And then they land in the hospital.

Now somebody a diabetic who has had  really great care for their diabetes is less likely to be harmed by some small errors that are made in their glucose management, their sugar management. Then somebody who is now incredibly, you know, like their, their diabetes is already harmed their body.

Their diabetes is already really brittle. And then they end up in the hospital and then that seems small error causes tremendous harm to that person versus the person who’s had excellent access to care. To diabetic care the entire time, 100%, both aspects of that. Right? 

Katie: [01:05:35] Absolutely. And that, that idea that, you know, even with the coronavirus and who is more at risk, and this is why you just named, why, why are people more at risk of dying from coronavirus than others?

And yeah. 

Genia: [01:05:49] Yeah. So all those comorbidities it’s one of the things that around coronavirus that disability advocates have been really clear about is, you know, you, under serve us and inequitably serve us and you serve us in a discriminatory manner. And we develop all these with called and healthcare comorbidities, which means other health problems.

And then we come into the hospital and were deprioritized for COVID interventions in resource strapped health systems because we have comorbidities that are more likely to make us dead, but you created the comorbidities in the first place. So yes, 

Katie: [01:06:24] you know, and the, and the, and the, you know, the first part of that, that we had mentioned the trauma informed care part of that, the part where you’re coming in from a society where you are discriminated against  you have experiences.

Like being, uh, undervalued in the medical system where you don’t trust doctors then, and you don’t have, so you’re, your emotional response to a medical staff is already affected as well. 

 I mean, it’s, it’s, it’s absolutely humbling to, to ask the questions that aren’t met with , like a full understanding and a grasp of, of all of it. Especially for somebody who touts myself as being part of the disability, advocacy world for a decade or more.

And this is just, all I’m always being educated and schooled on this experience. And part of it is that I don’t have a disability, you know, and I don’t live. I have a friend, very close friend with disabilities, who I’ve walked life with her in various ways.  But still I think everybody’s experience is different and there are different ways of, of understanding it.

I am wondering if you can share more now about your medical safeguarding program and the course that you’re offering, um, for people who are interested in learning more about what a medical safeguard is and how they might. Become one or help somebody,  become one. 

Genia: [01:07:50] Sure. So I have taught medical safeguarding to organizations for their staff and families, but also an inclusion Academy, which is Good Things In Life.

Did I say that right? Feel like I came off my tongue wrong, Good Things In Life, monthly membership, and inclusion Academy in March. We’re going to be out. I’m going to be teaching about medical safeguarding. And I think I mentioned earlier, I have a course on it, a workshop on it and a guide.

And so we’ll be diving into that and then providing opportunities to really think about what are the vulnerabilities of the person, you know, how might medical safeguarding play out in that person’s life, where it to be required and how we can sort of get our heads around the idea of medical safeguarding.

Inevitably people will have an opportunity. To act as a medical safeguard. You know, somebody in their life are sure is going to be vulnerable and, and in a hospital at some points. So if people are interested in joining and participating in that, there’s more information and registration information at goodthingsinlife.org/join.

Katie: [01:09:08] Thank you. 

Genia: [01:09:10] Thanks Katie.