This week, Genia and Katie wrap up their discussion on medical safeguarding by identifying what exactly those positive mindsets can look like in practice.
Genia, who’s been providing medical safeguarding services for her sister in intensive care since November 2020, talks about the key things that can really make a difference and how any health care worker, regardless of their personality, can truly change the patient experience with the right mindset.
And advocates can recognize that medical staff need understanding too. This was a fascinating wrap-up to a three-part series that’s all about empathy, support, and positivity. If you’ve missed the last three episodes, you may want to listen to those first.
Welcome toThe Good Things In Life podcast, I'm Genia Stephen. today is the third podcast episode, including conversation between Katie Bachmeyer and myself about the topic of medical safeguarding. Katie's interviewing me. And we are reflecting on my experience with my sister being in the ICU for four months. And just talking about medical safeguarding of vulnerable people in the hospital. I hope you enjoyed this episode. I look forward to your comments and feedback and let's jump right in.
You all have gone through adaptation after adaptation, you and Kate, you know, at the beginning of this, maybe having started saying, you know, okay, we know the game, we know what this is. We know it's rigged kind of against us in some ways. We also know that, that we need it and we're grateful. And, you know, you showed up and said, okay, I'm here to safeguard against the rape system. And, and Kate, Kate showed up with her resilience over the years of having, you know, built up her own strength and perspective on when hits the fan. And, um, so in some ways, you know, you showed up as a team and did this to a point that you've been whittled down maybe more than you had in the past, because this has gone on longer because it's in COVID times, there's more restrictions for maybe a number of reasons.
The whittling down now has led to this sort of hitting a wall. Also feeling like you're on guard a lot. That to me makes me think of just sort of being in a state of fight or flight, kind of in this realm of, um, uncomfortability. And then trying to come home and, you know, for you to D to come home and decompress before you show up again, you know, Kate doesn't even have that benefit of going home. And so you're both just sort of managing in your own way. And I want to ask you the question that's probably super annoying to even ask because, uh, it, it feels like, it feels like I'm placing an expectation on you and I'm not. I'm just asking for the benefit of people listening. What are the ways that you're finding self care through this? What are the ways that, you know, Kate or you are being able to sort of face the fact that this is a situation you don't want to be in and then, you know, get through it in the ways that you you're finding, what are those little kind of glimpses of, um, self care or not, you know, what is it that's getting you through?
So I'm not doing it well, and I want to put that out there mostly because. So first of all, it's not always as hard, right? Like it's not always as hard to be in the role of, you know, bedside advocate. And, but right now I'm finding it very, very hard and happen. But I don't, I don't want people feeling like when it's hard, I don't know. You need to like that they're failing if they're not finding great coping strategies or they're, you know, I, I kind of feel like that's unfair sometimes this stuff it's really hard. So, but some things, so what are the things that are helpful? Um, I think, you know, things that have been helpful for me is, um, asking for help, trying to figure out where there are little nooks and crannies of normalcy that I can carve out for myself and for Kate. Trying to create new routines that are supportive of this lifestyle, for lack of a better word.
And I think that, you know, all of the various things that we've done to try and build relationships between Kate and the staff are also beneficial, you know. Like they're, they're restorative, you know, there are people who, one of the, one of our favorite people at the hospital is Al. He's a physiotherapist, you know, he's pretty much everybody's favorite person in the ICU. Like he's just lovely. And, uh, you know, I, I mean, I focus on now, but there's many, many people, lots of nurses, um, the personal care assistants, um, there are lots of them, but far fewer than the nurses. So they tend to, you know, they're, they're caring for more patients, but they get to know the patients over time. And, um, you know, there's the personal care assistant who, um, you know, always tells Kate's, um, dirty jokes. Cause she knows that that's that's acceptable and you know, but she always whispers so that she won't seem unprofessional. And, um, you know, um, there's the, like, there's just all these little relationship matters, right? So for all the strain and all of the, this that is pervasive here in this reality of living in the intensive care unit and for all of the change, and then just incredible number of strangers that we're interacting with on a daily basis. The tendrils of relationship are profoundly positive for Kate. And for me,
You know, do go back to what you had said about being, having the suppression of self and your autonomy to the vagaries of who happens to be there. Al seems to be somebody who kind of cuts through that suppression somewhat. I mean, I'm sure you're still somewhat on guard and there's still some politeness and manners going on, even when he's there, but what is it, what is it about him that, that is different? You said he's everybody's favorite physiotherapist. Like, can you name a couple of things that he's doing, right? Maybe for somebody who is a medical provider listening to this, is it just his personality? So just as you,
I'm sure that he has developed his capacity for positive impact through his career. I'm also sure that his character just supports this. And I, I don't. So he, Al is charming. He's funny, he's friendly, he's disarming. And I don't want healthcare providers listening to this thinking that, that they have to be that in order to be awesome, nor do I want family members or people who may be patients themselves thinking that healthcare providers need to be that all the time. Cause I don't, I don't think that's true. And I think it's totally unfair to expect that, you know, you can be excellent at your job and be a little dour. And I was like, that's okay. But I think that, uh, the things that Al has done that are actions you can take without changing your character, committing to, you know, these years of, uh, you know, competency development.
I think that the things that Al does is he brings some outside joy when he can. And so he tries to find out whether people like music or not and what music they like. And then he plays their music. When he's doing physiotherapy, he always asks, if this is a good time, he remembers things about people and talks to them about them. He has a certain amount of, you know, similar to asking if this is a good time. He checks in with people frequently as he's working with them. And maybe for some patients, what Al does is painful or uncomfortable. For my sister it's not generally at all. And, um, but he's still checking in with her and that people rarely do that even when they are conducting painful procedures, you know? So there's this just sort of like, I see you. I see you. I see you. I'm so happy to be spending this time with you and bringing a little light into your day. Again, I don't think that all healthcare providers have to be out in order to be wonderful.
That would never be my husband walking into a room. He he's a lot more dour, as you said, I love that word, but very caring. And I think then what you just drew out. I'm so honestly, and so well is that it isn't personality or character as much as it is mindset. It goes back into mindset of ICU. And so if the mindset is, ICU, however, you are, whatever personality you have showing up with that mindset is going to sort of lead lead the way. And nothing you named that I can remember had anything to do with the medical care necessarily because that's pretty standardized, right? You should be getting standardized care. So across the board, you know, like you're going to get, and that's almost like maybe we take that for granted or something like that. That's good too. He does a good job of that. But then the part that you're remembering, the part that's lasting, the part that's giving you that tendril of support in the relationship field of this experience is, um, is his mindset perhaps the way he shows up for you.
Yeah. And I think the, for health care providers who are thinking about, you know, how do we make a difference in the us, you know, in the intensive care unit where my sister is right now, the staff physician changes every week. The residents change sort of more or less, I think every month, but there's variation week to week, depending on schedules and things like that. And as I've said, there's, I think close to 250 nurses. So I was really good at making people feel seen. And that is wonderful. Relationship is more than just being seen. And in a healthcare facility, relationship is going to be really challenging. Like I just laid out the numbers of people in the rotations of schedules, right. So that's going to be really challenging. But I think that, I think that what I was saying before about having some, uh, being, being, uh, somewhat humble about what you bring as a healthcare provider and looking for those, you know, recognizing that other people have those relationship pieces that are really bring something forward, that you just cannot, and that's okay that you can't, but that, that other piece is really important.
I think that's helpful. I also think that some, I think that as medical advocates, we can facilitate that, you know, which is both self-care for us and it's, you know, care, restorative care and healing care for the patient. We can facilitate the connection, you know, which is why it's really not okay that I'm losing my etiquette and not even introducing myself and Kate to people when they come in sometimes. Right. Like the thing that's probably made the biggest difference for both Kate and I is the slow building of relationship, pretty superficial, but still relationship with the staff there. But that doesn't happen. I mean, it does happen organically over time, but lots of, lots of the relationship between Kate and the staff anyway, has been scaffolded by myself and the other people with Kate. Right. So I don't want to just focus, I guess. I mean, I guess I want healthcare providers in general to be thinking about these things, of course, but I'm also just really sensitive to the demands on healthcare providers and as medical advocates or people who are concerned about safeguarding. We can, we can go a long way to scaffolding the relationship on the patient's behalf, but also recognizing how the healthcare provider might need some scaffolding.
Yeah. I think that is showing itself as you know, more and more doctors and nurses are feeling overwhelmed by the demands of a pandemic and everything. And we're really able to hear more stories coming from the medical system of people being like, this is really hard. Um, and certainly even, you know, medical students who, um, have a higher, you know, suicide rate and just the pressures that come with the responsibility of keeping somebody alive or having all the answers. And, um, yeah. And, and it seems that your role there can be of benefit to, to their ability to perform in a way that's more human and more relational.
Yeah. Yes. I think, yeah, it's good for healthcare providers for sure. But I think it's the primary concern is relationships being good and restorative for the patient and COVID has created a layer of pressure stress crisis for healthcare providers, but COVID did not create this problem.
No, of course not. Yeah. Yeah. Just like exasperating the issue that's already there. Yeah. Now it's just, uh, it's now they are the top story.
Yeah. It's the top story. But the, the fact that healthcare providers don't have time to spend with patients and develop relationships and aren't able to offer for the most part continuity over time. That's not a new problem. Yeah,
Yeah, yeah. Um, and you know, I'm getting back to, to Kate and getting back to you all and, um, sort of maybe wrapping things up here. One of the things that you had said when we spoke earlier was, you know, that this idea that, um, a typical life, this is something Joe, Joe Massarelli has shared with you. That a typical life is not an easy life or life without problems, but having a typical life is one where the problems are typical. Um, and so not layering additional problems on top of what's already there. And so can you speak to that as far as what that means in the, in the hospital, and then, you know, looking at that as, as if somebody is, um, living within the service system themselves, and that is their life, uh, they're in a residential setting and that is their life day to day, they have direct support staff. They have a day program, they go to, they have, um, a less typical life, um, and how those problems are layered on top. Yeah.
So yeah, I mean, I've heard Joe talk say this dozens of times over the couple of decades that I've known her more now, I guess. But for whatever reason, the last time she said it, when she was teaching, I, you know, I kind of glommed on to that particular statement and I've been reflecting on it as far as Kate's experience and that I love it because typically when you go into the hospital, you know, you can expect that your life is valued, that people think that you should get better so that you can get back to contributing to your community. They assume that your loved ones want you to live and don't have a death wish for you. The rate of error because of miscommunication or challenging communication between you and your healthcare team is as low as is possible possible within the system, you know. Are likely have people who are going to like people who are in your life and freely give them relationships who are going to be providing support to you through this difficult time of your illness. You know, and the role of medical safeguarding in some ways is to try and equalize that, right? It's to take these extra atypical threats and risks and bring them back down to just the typical level of strain and risk that is inherent in being a hospital patient.
So, and then again, when we were talking earlier and it was talking about just, you know, if you have all these atypical troubles, problems, threats, stressors in your life, so bricks that you are carrying and nobody, and you can't take the bricks off your back and nobody is taking them off for you. Then at the very least, it calls on us to recognize those extra bricks that you and I are not carrying as we move through our day and to have a great deal of both empathy and respect for the fact that the person is carrying all of that extra load on their back. And to recognize that, that it has an impact and, and to be empathetic about what that impact is and how it manifests in the person's life. And then to do what we can, you know, to, to, if we can't do anything like I can't right now, I can't do anything about this.
I cannot get my sister out of the intensive care unit. So I cannot take those that load off of her. Right. But I can do what I can by being there and being a bedside presence in medical safeguarding and trying to help her build relationships with people. I can try and remove some bricks that way, but sometimes, um, you know, people can actually just not end up in a situation that's adding bricks, right? You can be thinking about individualized supports for people to have their own home or to live, you know, in a home with other people like a sh you know, home sharing, calm, shared home or whatever. Sometimes you can just avoid it altogether, but when you can't be, when you can't avoid it, when you can't take the entire weight off of somebody's thinking, always thinking about like never stopping, but continuing to think about how can we provide this service in a way that removes some of the bricks, the person is carrying by the nature of living in the service. And then what can we be doing to compensate? So maybe we're, you know, lightening those bricks. We can't get rid of them, but maybe we're lightening the bricks up somehow. And what are we doing to make other aspects of the person's experience better to kind of even it out for them.
Yeah. Yeah. And you had talked about, you know, just thinking about our rich community as, as an option to that, thinking about how do you create a richness and community to help those bricks be lifted in some ways. Yeah. It makes me think too, of the trauma responsive care question, which is, you know, when you see somebody doing something you don't understand or responding in a way you're, you're not quite, you don't think, um, makes sense. Um, instead of asking what's wrong with that person, you can ask what, what happened to that person and, you know, asking yourself that question builds into that empathy of like, what could have happened in these situations before in a medical setting or wherever that, that could create this type of response. And then not just that, but then asking and what have they done to survive? You know, what are the ways that this person has learned to ,respond in order to survive and seeing, and recognizing, you know, a person in a state of duress or anxiety as a survival mechanism that they've learned and adapted to? Um, yeah.
And their survival rate has been a hundred percent so far.
Yeah. Yeah. Well, tell, tell everybody a little bit more about your medical safeguarding course, Genia, if you could, and, um, maybe how they can benefit from taking it by, you know, having a little bit more one-on-one interaction or more personalized, you know, interaction with you.
Sure. So the, um, it's a short course, so it doesn't require signing up forever kind of thing or committing to a semester. I mean, um, and in the course, we talk about how to advocate for bedside presence for vulnerable patients, which is specific to COVID because usually hospitals are fairly good about supporting, supporting the presence of people. But right now, many people are being restricted from having medical advocate with them. And then talk more and in-depth about the job description of a medical advocate, you know, the presence, observation, questioning, caring, and PR rep roles. And we talk about some strategies, which we've sort of alluded to a little bit, but we talk about strategies for being effective in the role as medical advocate, in the role of medical advocate. And then we also, I also teach about what can be done to make people safer if continuous bedside presence is not possible. And so we talked about strategies for that as well. And then there's also included in that, uh, guide pretty lengthy guide that covers topics like understanding, do not resuscitate orders and full codes. How to think about building and coordinating a team of medical advocates, which is the ideal, how to think about discharge home, and then how to create a personalized medical safeguard plan for an individual that you might be concerned about. And includes, you know, time to talk and ask questions and have conversations to make this really relevant to people's individual experiences.
Nice. I think that's really beneficial. And, um, I think it's helpful for people, even if you're just preparing for a future with an older parent, or like you said, any, anybody will, at some point in their lives probably be a medical advocate for somebody, so yeah.
Or at least have the opportunity to step up for it. Yeah, yeah,
Yeah. Okay, great.
Want to thank you very much for sort of being, being the change we want to see in the world as far as showing up for people in your community and, and being helpful to me and pulling out aspects of my story. And I'm really grateful for it. You know, one of the things that is difficult about this experience of sort of always being in this performative role is that there's very little opportunity to just talk with somebody about it, where you're not worried that you're saying something wrong, or, you know, there's going to be some repercussions. So it's been really nice and helpful for me to just have these discussions with you. And I'm grateful
It's been a total pleasure. So you're welcome.
Thanks. So if people are interested in joining, so the, the workshop that I'm teaching, the short course I'm teaching is part of Inclusion Academy, which is our monthly membership. And if people are interested in registering and finding out more, you can go to goodthingsinlife.org /join. And, you know, I hope that you will. I hope that this has been valuable to the people listening to you. I hope that, I hope that you join us for this medical safeguarding workshop. I think you will find it valuable. And I would love to hear more about your experiences with medical safeguarding and what your concerns are about the safety of vulnerable people in hospital. Thank you very much everybody. And we'll see you next week.
Special thanks to Katie Bachmeyer for joining me this week. Until next time!