34. The Different Paths in Transplant Social Work with Sam B., LCSW and Dora V., LCSW

Taylor Gilbert (00:00)
Hello everyone, welcome back to the Social Work 12th podcast. I'm Taylor as always, and Faith is not here today, but I am here with two of my really good friends and amazing social workers. And I'm super excited for us to be talking about transplant social work. So.
Samantha Butler (00:10)
BABY!
Taylor Gilbert (00:17)
Today we have Sam, which if you are new to this podcast, Sam was already Sam. are our first returning guest and you were our first guest also, just like in general. So yeah, anyways, I think it's episode three or four where Sam comes on, talks about her financial.
Samantha Butler (00:26)
Hahaha
okay.
BLEH!
Mm-hmm.
Taylor Gilbert (00:43)
struggles essentially and also your path into social work and all that. So definitely go check that out. But yeah, thanks for joining us Sam and Dora, my other bestie. We all met in gosh, Dora and I met 2021, 2020. ⁓
Dora (00:56)
2020.
What a year. I think
Taylor Gilbert (00:57)
Yeah. What happened? We met.
2020, hospital social
work, doing care management, COVID, all just nuts. So yes, I'm super, yes, yes. And then we both transitioned into the same job. We left that job and both went into working into transplant. We met Sam and now we're all here to talk about all the different sizes of transplant social work. So.
Dora (01:10)
Yeah.
trauma bonded for life.
Samantha Butler (01:15)
yeah.
Taylor Gilbert (01:29)
We're going to start with chatting about recipients. So we're going to get into like the donor side and then end with a money conversation. So yeah, I'm excited for this because I mean, I think, well, I can't remember about you Dora, but I remember that when I was in grad school, I wasn't really familiar with transplant donor. mean, especially the donor side. Like, did you hear about transplant social work when you were in grad school?
Samantha Butler (01:33)
BOOM!
Dora (01:56)
Absolutely not. No, and the track that I was in in grad school was called Health Across the Lifespan. So it was healthcare focused. Yeah, but the most we talked about healthcare was general hospital social work, emergency department social work. And that was kind of the extent. We never talked about any of the specialties. So my mind was kind of blown when I learned more about
Samantha Butler (02:02)
⁓
Taylor Gilbert (02:04)
Me too.
Dora (02:22)
transplant social work, donation social work, oncology social work, bone marrow transplant social work, all of these different subsections within medical social work. So it's been really fun getting to know some of the specialties over the years.
Samantha Butler (02:29)
BLEH!
Taylor Gilbert (02:34)
Yeah.
Yeah, for sure. Okay, so Sam is our recipient expert here. You don't think you are?
Samantha Butler (02:46)
I guess.
No, you know what? At this point, I think I have to own it. I realized the other day and come, I guess, come June, it'll be nine years.
Taylor Gilbert (02:57)
that you've been in transplant.
Samantha Butler (02:59)
20, 20, 2017, right? Is that math right? Nine, nine years? Yeah.
Taylor Gilbert (03:05)
Yeah, yeah. mean,
a transplant center literally recruited you to help them open up their transplant center. So, so yeah, you're, you're the one. You're, you're that girl. Okay. So
Samantha Butler (03:12)
Yeah.
Okay.
you
Taylor Gilbert (03:23)
We're starting with recipients. Let's talk a little bit about, I know that you worked in a dialysis center. I feel like that's one recipient area that's really common for social workers to know about. So tell us a little bit about your brief stint there.
Samantha Butler (03:24)
Mm-hmm.
Yeah.
Mm-hmm.
Brief stint, yeah. mean, so to go back to like your point that you were talking with Dora about, I also had no idea about medical social work, transplant social work. None, no. I got into transplant by complete accident. But my first like, the first time I knew that social workers could work in a hospital was I had a professor that was a sickle cell social worker in Atlanta.
Taylor Gilbert (03:49)
⁓ I thought you
Samantha Butler (04:04)
So she worked at the Children's Hospital in Atlanta and specifically worked with sickle cell kids. And I was like, whoa, what are you talking about? And that was super cool. then in grad school, I worked in the ER and then kind of went from there. However, I started working in transplant in 2017. And then in 2020, I was having a difficult time getting a job in Portland where I had moved to
Taylor Gilbert (04:12)
Mm-hmm.
Samantha Butler (04:33)
And I had attempted to get on the heart transplant team in Portland and it just wasn't working out with my license. So, but I needed to get a job. So that's how I wound up in dialysis. So it was interesting to go from recipients to dialysis. At that point, my only experience with the dialysis units was me calling the social workers to do like adherence checks or compliance checks to see like if the patients were attending their treatments, staying the entire time, et cetera. But
Specifically, when someone is a dialysis social worker, their primary role is to help them transition onto dialysis. When we're talking about patients that are on dialysis, we're talking about most of the time people that have diabetes or high blood pressure. And it has been either really poorly managed or they had no idea that they even had high blood pressure.
and they're winding up on dialysis suddenly. as most social workers can understand, that is a huge life change, as well as like an emotional crisis. And so your primary role is, especially in the beginning, is helping those patients adjust to being okay. And now suddenly your whole entire life revolves around being in a chair for...
Taylor Gilbert (05:34)
Yeah.
Samantha Butler (05:51)
three, four, five hours at a time, three days a week. How does that impact your job? How does that impact your ability to care for your kids or coordinate with your partner? How does that impact your health insurance? You you can see the whole scale of how this can go. So you're helping that, helping with that initial crisis. And then you're also helping people talk about their options, you know.
Taylor Gilbert (06:06)
Mm-hmm.
Samantha Butler (06:15)
Dialysis keeps you alive. Essentially, when you are in organ failure, specifically kidney organ failure, dialysis is your only option because the other option is either a transplant or palliative care and talking about transitioning to comfort care.
Taylor Gilbert (06:30)
Hmm.
Samantha Butler (06:30)
all
the other organ systems like heart, lung, and liver, they don't have this option. So dialysis is one of those weird gray areas where it's like, okay, I know that I'm an organ failure, but I have this machine that can help keep me alive. And so you're constantly confronted with your mortality. And so, you you're also helping the patient process that, but well, that's what I would wish was the majority of my job. But
Taylor Gilbert (06:50)
Hmm.
Samantha Butler (06:55)
But a lot of the time, the dialysis social worker is really dealing with transportation. Okay, a lot of your patients have transportation issues getting back and forth into dialysis. It's not just diabetes and hypertension now. We have all these other comorbidities that are impacting their ability to work, complete their daily activities, know, compound that with how they're dealing with all of this emotionally, you know.
and you guys know we have to handle the crisis first and then we address the emotional status of where you are. And a lot of these patients are now suddenly on a fixed income. And so essentially you become a case manager. And where I think dialysis social workers, if they had the ability within that organization to do this,
Taylor Gilbert (07:33)
Yeah.
Samantha Butler (07:45)
you know, doing a little more therapy, doing a little more crisis intervention would be amazing, but it's just not possible. These dialysis units have like, God, I can't even tell you how many patients I had, over a hundred. You know, we're, and, go ahead.
Taylor Gilbert (07:56)
Wow.
So you were responsible for like essentially helping them get in and make it be a successful experience or, know, like.
Samantha Butler (08:09)
Yeah, well they get a, you know, when you meet the criteria to go on dialysis, most of the time you're in the hospital. You guys know you worked inpatient. You'd have those patients that were stuck in the hospital for a week, two weeks, three weeks, waiting on a dialysis chair because that's how busy the dialysis units are. ⁓ And we're talking, they're open six days a week. You can either have a Monday, Wednesday, Friday shift or a Tuesday, Thursday, Saturday shift. And
Taylor Gilbert (08:26)
Yeah.
Samantha Butler (08:35)
you know, you have a first, second, third, and sometimes a fourth shift, and you're waiting, and so these patients are sitting in the hospital. So they would get a referral, wait for a chair, and then when they came into the dialysis unit, you know, it's a multidisciplinary team. You have the nurse, you have the tech, you have the facility manager, as well as the nursing manager who's in charge of everything, and then all of us, and a dietitian, and all of us meet to kind of help that transition.
So we have to assess for depression and anxiety, I think, quarterly. And you have to meet with each patient at least twice a month. There are certain things that you have to hit every month, I think it's twice a month. And then one of the bigger parts of your job in the dialysis unit is sending referrals to transplant. So that was, think, the most interesting part for me was
going from working with recipients to being on, to be working in a dialysis unit because that was when I went, okay, so the social worker is the one sending the referrals to the transplant centers. And it was very interesting now that I've progressed even farther into my career because there's all of these CMS guidelines because
Taylor Gilbert (09:38)
Hmm.
Samantha Butler (09:49)
that primary nephrologist, so a nephrologist is a kidney specialist, because that nephrologist is not a kidney nephrologist, a kidney transplant nephrologist, they cannot tell that patient that they can't get a transplant. So it doesn't matter if this patient is medically not suitable, psychosocially not suitable, so you could be the dialysis social worker and go, this person's not getting a transplant, but you have to send the referral anyways.
and then the transplant center reviews the referral and declines them. Or they say, yeah, come in and we'll do our initial assessment. So it was really interesting like seeing all of that, because there's, and you guys know this, organ donation and transplantation is the most heavily monitored part of the medical system. We have to hit all of these criterias. We have to adhere to all of these regulations and rules and how that impacts the dialysis units.
Taylor Gilbert (10:28)
Yeah.
Samantha Butler (10:44)
is they have to hit a certain amount of referrals every month and a certain percentage of their transplant centers, like a certain ratio of their patients, have to be either actively working toward transplant or on the transplant list as a way to keep the dialysis units from holding onto patients because, as we all know, ⁓ so much money. Every butt you have in a seat,
Taylor Gilbert (11:04)
There's money. Money in that. Yeah.
Samantha Butler (11:11)
is over $30,000 of treatment and it's a lot. Oh yeah. Per treatment, if not more. Yeah. And so it's one of those, yeah, it's one of those like regulations to keep the dialysis companies from exploiting patients, also making sure that they have the opportunity to get a second option. So.
Taylor Gilbert (11:15)
Wow, that's a lot.
That's wild.
Right.
Mm-hmm.
Dora (11:37)
I was just curious if Sam ever felt any of the pressures of that for-profit kind of churning system while you were a social worker working in that setting. Obviously we had adhered to a pretty strict code of ethics and I'm sure it's easy to like know where you kind of stand in that system. But did you ever feel implicated in weird ways?
Samantha Butler (12:00)
Absolutely, and I won't say what dialysis company I worked for but the you know, I quit and and I quit for two reasons and The biggest reason why I quit was because so we have financial court you have a financial coordinator at the dialysis unit and
the dialysis centers get reimbursed at a higher rate with private pay patients than they do with Medicare patients. And all of us know that majority of the patients that are on dialysis are on Medicare and Medicaid. And I noticed our financial coordinators, well, this is not notice.
I witnessed all of this. They were essentially being told to give more attention to our private pay patients. And then I had to give more attention to our Medicare patients, which of course I'm happy to give attention to all of my patients. I'm not going to treat anybody differently, but I did not agree with that and I felt gross and that's not okay. I don't think that anybody should be treated differently just because they're, you know,
Taylor Gilbert (12:57)
Mm-hmm.
Samantha Butler (13:04)
They earn more money. Their reimbursement rate is higher. But these, we're talking about for-profit companies. They can list themselves as non-profits, you know, and we can dig into all of that, but it all comes down to the dollar. mean, you can say this, I'm about a transplant center and the hospital systems, know, follow the dollar. Everything comes down to that. Yeah. Yeah.
Taylor Gilbert (13:05)
Their financial status, yeah.
Yeah, yeah, yeah. Right. I mean, all of the work, all of the work that we do, right, as social workers, regardless really of whatever
niche you work in. ⁓
Samantha Butler (13:30)
Yeah, and that
was the biggest reason why I had to go. was like, I can't keep doing this. I feel like I'm dying. And you have to.
I think we've talked about this before, like pick where you can do the most good. You can't work against these systems. You are not going to change that, but maybe you can change the interaction that you have with a patient and help them not feel like they're just a number. So that was one of the biggest reasons why I left. then, you know, in wall, I had been trying to apply and get jobs in Portland. I had applied for...
Taylor Gilbert (13:56)
Right.
Samantha Butler (14:07)
a job at one of the hospitals that we all met at and got that they called me and they gave me more money. And so I was like, yeah, I'm leaving. So later.
Taylor Gilbert (14:13)
Mmm.
Period. Later. Oh
my gosh. Okay, so now with recipients, I feel like there's the, you can work inpatient, outpatient. Tell us a little bit about like what that worked looks like for you.
Dora (14:22)
Thank
Samantha Butler (14:24)
Hmm
Mm-hmm.
Well, gosh, it's both, you do both. Some transplants, every transplant center operates differently. I can tell you that I personally, since you called me an expert, believe that we should, the transplant social worker should be knowledgeable in the inpatient world and in the outpatient world, but.
Taylor Gilbert (14:38)
Okay, okay, I thought it was one or the other.
Samantha Butler (14:57)
kind of how it starts is you have to be in organ failure and again each organ system has a marker that determines what stage of organ failure you're in. And because most of my experience is in kidney, I'm gonna talk about kidneys. the nephrologist says you meet the criteria for a transplant. We're gonna send a referral to
Taylor Gilbert (15:11)
Yeah.
Samantha Butler (15:20)
you know, your local transplant center, and they're gonna go over kind of what to expect with a transplant. So that's the first step. So we get the referral, our intake coordinator does a brief screening. There are certain things that automatically rule you out as a transplant candidate. You know, the one that I always use is if you have active cancer, depending on what cancer it is, you know, most cancers automatically rule you out.
but there are some that are, you know, kind of like borderline that the doctors may go, okay, well, let's dig into this a little bit more. But for the most part, like if you have an active cancer that automatically rules you out as a transplant patient, because you will be put on immunosuppressants after you receive your transplant and that can make the cancer worse
then your cancer
will get worse and then we have to take you off the immunosuppressants and then you have to get treatment for your cancer. It's all, there's so many medical things involved in it and I know we're trying to focus on the social work stuff so don't let me go off into the medical stuff for too long because I love it. But essentially when you come in for that first appointment,
Almost every transplant center does it the exact same way. The very first thing you do is you get education. So a nurse sits down with you and does an hour long class of kind of the entire review of the transplantation process. They go over, you know, where your organ comes from, whether that's a deceased donor or a living donor, medications, how it impacts your life afterwards, how it impacts, you know, your emotions. And they, you know, go over all the team that you're going to meet with. And then what I do,
is we kind of do like a round robin multidisciplinary appointment. And so a lot of times these transplant patients are at the transplant center all day long. So they're meeting with four to five different providers that morning. know, one of my transplant centers, they did a one day eval where you came in and the first thing you did was blood work, go to class, meet with all of the providers, get lunch, and then go get your CT scan.
or any other diagnostic testing that we needed for you, because we need all of that. As kind of as a way to like expedite the process, but that can be very overwhelming. I had another transplant center that would break everything up into a couple of days, you know, it all depends. But my first initial touch point with a potential transplant patient is where I do a psychosocial assessment with them. so, you know, transplant,
impacts so much of your daily life and CMS makes it an absolute requirement that a surgeon and a social worker see you in order for you to be waitlisted. Really all the other disciplines can happen at other times but CMS says a surgeon and a social worker has to evaluate you and approve you to be on the transplant list period. And this is, sorry. Yes.
Taylor Gilbert (18:08)
And when we say CMS, we're talking about Center for Medicare and Medicaid Services.
Samantha Butler (18:13)
there who approve transplant centers to reimburse and receive funds for Medicare and Medicaid. And as we talked about earlier, most of our patients are on Medicare and Medicaid. And so, as you mentioned earlier, I'm in the middle of helping open a transplant center, and so we can come to that later, but this is the stuff I'm learning about while I'm helping open this program.
But specifically for the social worker, we do a psychosocial assessment. I've seen a variety of different ones, but they all follow the same theme. Do you understand your cause of disease? What got you here? Did you ignore what your doctor said? Did you not take your hypertension medication or poorly manage your diabetes? It's a part of my job to focus on that because...
Taylor Gilbert (18:58)
Mm-hmm.
Samantha Butler (18:59)
The number one reason why patients lose their organs are from non-compliance with their medications. And this feeds into why a social worker has to see you and assess that. And that can be a variety of things. Is there a learning disability? Do you have low medical literacy? Are you in denial? Are you struggling emotionally with all of this? Is it confusing? So I dig into that.
Taylor Gilbert (19:22)
Mm-hmm.
Samantha Butler (19:24)
you know, what got you here? Do you understand your primary cause of disease? Ask about their family support. You know, like I said, transplant impacts so many pieces of your life. And again, most transplant centers require you that you have a caregiver after transplant. And when we say caregiver, we're not just talking about somebody that helps with your dressing changes or taking your temperature. We're talking about somebody that is your emotional support system because you go from
Most patients that are on dialysis are very used to always having a social worker around, always having a nurse around, somebody checking in on them, them not really having to think about anything. And then when you get a transplant, we pull the rug out from under you and we go, no, the whole point of transplant is for you to be independent and for you to get back to having a normal life. And so you're not gonna have a nurse making sure that you take your medicine every day.
Taylor Gilbert (20:06)
Hmm.
Samantha Butler (20:14)
You have to check your blood pressure and your temperature and your weight and you have to monitor all of these things And so I'm assessing for their social support, you know, do you have a solid foundation? For someone that can step in and go hey you missed your meds this morning, you know Hey, I've noticed that you're You know struggling to understand these meds a little better. Let's sit down, you know
Taylor Gilbert (20:18)
Mm-hmm.
Yeah.
Samantha Butler (20:35)
They're really, they are the second brain with transplant. We're changing so many things after you receive a transplant and giving you new and updated information based off of your lab results and things are happening so fast, you have to have someone else. So I assess that piece. Then we talk about their job, if they're working, if they're not working, that's another thing that happens.
Taylor Gilbert (20:40)
Yeah.
Samantha Butler (20:59)
a lot of these patients are on disability, but they want to go back to work. Maybe you've been on dialysis for five, six, seven years and you haven't worked in that long. What's the plan? How are we going to get there? And then I assess their adherence with their medications, if they're going to dialysis, if they're on dialysis, and then I dig into their mental health.
Essentially what I'm trying to say when I get to the emotional piece of transplant is this is another transitional period for our patients. ⁓ A lot of them are gonna receive a deceased donor transplant. So by the time they get their kidney,
Taylor Gilbert (21:25)
Right.
Samantha Butler (21:33)
they have been waiting for a really long time and they really don't believe it's gonna happen. And so I have to make sure that before they're even placed on the wait list, are they having any symptoms of depression? Are they having any symptoms of anxiety? Have they been diagnosed with a variety of different mental health illnesses or have they ever had
Taylor Gilbert (21:36)
Mm-hmm.
Samantha Butler (21:56)
any thoughts of suicide, homicide, you know, go into all of that, assess if they've ever had any addictions.
because of what I was talking about earlier, they have dialysis, they have a bridge to transplant. They have something that keeps them alive.
Taylor Gilbert (22:08)
Mmm.
Samantha Butler (22:11)
when we're talking about heart, liver, and lungs, they don't. And so a transplant is, you know, all transplants are life saving, but when we talk about kidneys, specifically with my experience, you know, we have that ability to go, okay, we need to get you to rehab, I'll help coordinate that, and we can talk about all of that. Icessive.
you know, they're on probation or parole. We dig into all of those kinds of things. All of that impacts transplant in a variety of different ways.
Taylor Gilbert (22:38)
So that's like outpatient assessment, know, you're kind of like, yeah, so inpatient. Tell us a little bit about what that looks like.
Samantha Butler (22:41)
patient. Mm-hmm. Yeah.
Yeah,
so I, when we're doing inpatient transplant, these are patients that are fresh out of surgery. So your primary role is like if we're talking with a living donor recipient, so somebody who had a planned living donation, that's so much easier. You you see them in pre-opt, you know, five to,
14 days before they go in for surgery and you've already hammered a lot of your stuff out. They know how much their meds are gonna cost because we've talked to them about it. They have a caregiver, they have a transportation plan. We've got all of that set, but for the most part, an inpatient transplant social worker is seeing those patients that are either freshly receiving a deceased donation,
or they're inpatient for rejection treatment, which is a whole other piece. And so when I worked at a really big transplant center, I was seeing transplant patients that were day one post-op, five years post-transplant, 10 years post-transplant, and maybe they don't really know me, but I'm involved because if I were to focus on our freshly
deceased recipients, deceased donor recipients, my primary role is actually, you know, kind of helping them understand like, hey, it happened. You got your organ. Now we're here. Remember all that stuff we talked about? Okay, let's dig into it.
Taylor Gilbert (24:09)
Mm-hmm. Yeah.
Yeah, in terms of like your
post discharge plan and kind of like you going on and living your life. Yeah, lots of case management, discharge planning.
Samantha Butler (24:18)
Absolutely.
Yeah, lots of case management,
discharge planning. But before they even come into the hospital to get admitted, when a recipient gets called in for a deceased owner transplant, that coordinator is asking them, hey, has any of this stuff changed? You know, they're going through a whole list of any medical changes, but then they also always ask, has your caregiving plan changed? Has your insurance changed? Because
We cannot do any harm to these patients. And that doesn't just mean the medical and surgical pieces of that. That means their psychosocial stuff too. So I've absolutely had patients get called in for a transplant and then they say, yeah, actually my insurance changed or my caregiving plan changed and they have to move on to the next person on the list. And so, yeah, yes, it's...
Taylor Gilbert (25:12)
⁓ man, that would be so hard.
Samantha Butler (25:15)
awful. But we can't set them up for failure. We would be it would we would not be doing it's negligent 100 % yeah.
Taylor Gilbert (25:17)
Mm-hmm.
Yeah, yeah. That's negligent, yeah. Yeah, absolutely.
Wow, okay. Yes, that's the point of a podcast interview. All right, we're done with recipients for now. Obviously, there's a lot there. So yeah, we're gonna talk about the...
Samantha Butler (25:29)
Sorry, I talked so much. ⁓
BLEEP
Taylor Gilbert (25:41)
Donor side, there's living donors and the deceased donors, like Sam had mentioned. Dora and I have most only have worked in the deceased donor realm. And that's where all three of us were coworkers at one point. So yeah, let's start with the deceased donor Dora. How would you explain? So, so let me, let me start this off. I will say right now.
Samantha Butler (25:49)
HMM
Taylor Gilbert (26:04)
For deceased donors, we work at what's called an organ procurement organization, OPO for short. There's like 55 in the country and they all cover a certain area, a certain region of the country. So, um,
Our role is our job title, donation and family advocate. So talking with families about their loved one, donating their organs to save someone else. So yeah, I'm curious, Dora, how do you explain, how do you tell people, what do you say when you explain what we do? Cause it's interesting.
Dora (26:45)
Yeah, it's, it's really kind of impossible to put it in into a nutshell because it's such a unique position and the there's so much gravity and weight to the work that we're doing that it can be difficult to find words to describe our work. And, you know, kind of like Taylor was saying, yes, we are talking to families primarily about
organ donation and that is a very large facet of our job, right, is having the conversation with families and we can talk a little bit more about that. But kind of how I view our job is as a donor family advocate, we are supporting these families that are losing someone in an ICU, typically after a very unexpected traumatic accident, right, whether it was
a car accident, overdose, someone attempted suicide, stroke, right, could just be a medical implication as well. We are supporting these families as their loved one is being, after they've made the decision to transition to comfort care, there are no life,
sustaining measures or curative treatments that could be provided to their loved one. Families made the decision that they want to transition to comfort care and end of life support. My team as a family advocate would come in and support the families while their loved one is evaluated and going through the process of becoming an organ donor after they pass away.
Taylor Gilbert (28:20)
Mm-hmm. Yeah.
What you gonna say, Samuels?
Dora (28:22)
Yeah, so what does that really look like? Right. I don't want to focus so much initially on the first conversation that we're having with these families from the get-go, because the work is so much bigger than just that initial conversation. When we are going through the organ donation process and someone is being evaluated to see if they are able to donate their organs,
There's a timeline associated with this, right? Meaning this person that is either registered to be an organ donor or their family has stated that they want to try to save lives of other people through organ donation. There is a very strict screening and a medical evaluation that takes place so that we can ensure that any organs that are recovered
are safe enough for transplant, right? And not putting recipients at risk for any adverse effects, right? So during that process, the typical timeline for this medical evaluation takes anywhere from two to four days where that person is still remaining in the hospital receiving the supportive care of the medical team. Comfort care measures are usually in place, right? So
continuing to assess for any pain or discomfort that this person might have while they're still connected to the ventilator or the breathing machine that's helping support their breathing. So during that process, they're gathering medical evaluations that include blood work, right? To make sure that we know with certainty what the
person's blood type is that's, that's a really important part and making sure that we're finding appropriate recipients. other medical evaluations, would include, a CT scan, echocardiogram, imaging to help us, really narrow down on the, the size and functioning of their organs. Right. So.
Taylor Gilbert (30:04)
Mm-hmm.
Dora (30:20)
With all of that being said, we know that there's a time process, right? Usually while all of this is happening, there's a possibility that this family and their loved one has already been in the hospital for a period of time, right? Could be a day, could be two days, it could be a week or two weeks, right? While this family is going through so much trying to figure out if it is their loved one going to have a meaningful recovery and coming to the understanding that
No, they're not going to have a recovery in a way that would be meaningful or acceptable to that person or the family. So our job as family advocates is really to just kind of stand side by side with this family, right? They've already gone through so much turmoil with the accident that this person has experienced with all of the decision making back and forth with the doctors and the medical team.
And now it's like, okay, we want to move forward with donation, but wow, we're going to need to be in the hospital for a couple more days to make this to be able to happen. And that is a big, a big ask and a big commitment and a real generosity for, for families to, to offer. Right. So we are meeting with the families every day, sitting with them.
answering all of their questions, really trying to cut through any red tape that the hospital is putting up and trying to get them connected to resources, funeral home support, grief resources, Answering questions that they have, trying to just bridge a gap between them and the donation process.
So because I do not have any specific requirements of me as a social worker, right? I feel like I'm not put into a box so much in this role. I don't have like many tasks that I need to complete. I don't have a very high caseload. My job is just to really support this family. I have, and this is not the same at every OPO, but the one that I'm fortunate enough to work at, I essentially have
Taylor Gilbert (32:04)
Mm-hmm.
Dora (32:20)
unlimited time to be with this family and hear their stories, hear their concerns, and just really get to be a humane presence for these families during the process, which I think is an absolute privilege, right? Taylor, Sam and I have all been in a variety of medical social work roles, including hospital social work, emergency department social work, right? Where
Taylor Gilbert (32:36)
Mm-hmm.
Dora (32:45)
We don't have the time in those roles to get to know the people really that we're working with because we need 30 other people. We have 30 other people that we have to see. are crises happening all around us and we can't give the issue, the attention or care that it deserves. And those roles is how I felt. So as a family advocate, supporting these families, we...
are blessed with having time to help them kind of begin to process some of the trauma that they're experiencing kind of in real time. And it's a very beautiful, beautiful thing.
Taylor Gilbert (33:26)
Yeah, I feel like that's one of the things that we really were like loving about the job. I mean, still do after coming from inpatient social inpatient hospital work where it's like, wow, when I'm going into this room, if they need me to stay in here for an hour or two hours, I can versus, you know,
us discharging, it's like, I'm coming in, I need to talk to you for 20 minutes, we need to talk about your transportation plan, where you're going, and then I gotta go because I have to go and try to discharge all these other people. So yeah, is really amazing that we are allowed, you know, by the organization that we work with and given the opportunity to spend that time with families. I think that was a really good explanation.
Dora (33:51)
Right.
Yeah.
Taylor Gilbert (34:15)
And yeah, I think a lot of the work is that initial conversation. And I remember starting this job also, you know, remember starting this job like, wow, how do we open up this conversation of talking to someone who
just lost their, you know, I mean this, their person is still on the ventilator, but they have been told your person is not going to survive yet. Three days ago, they were just talking to this person. This is very unexpected. And now we're coming in to offer organ donation. Like how do you even start that conversation? How do we
Dora (34:39)
Yeah.
Taylor Gilbert (34:46)
It's a lot, we're not gonna get into it right now, because we do not have time, but it's a whole thing, you know? So I think that's large part of our job, us kind of being able to support families if this is right for them through the process is amazing, and then we're supporting them with saying goodbye to their loved one, which is also another huge just moment. And I think...
Samantha Butler (34:52)
Yeah.
Taylor Gilbert (35:09)
Also in terms of schedule travel, like the job, the organization that we work for, we work 12 days a month, 24 hour call shifts. And because our region is sort of big, we work with all the hospitals in that region. And so we can be, we could travel to any of these hospitals at any point. I think.
We're not, I haven't been woken up that many times over at night at 2 p.m. but Dora over here. I feel like, did you ever have to get woken up that late, Sam? I feel like Dora and Alex are like the ones where overnight.
Samantha Butler (35:44)
I know poor Alex.
Overnight always I got woken up at least twice, but it was always around like 11 o'clock. It was always around like that night shift referral coordinator going to the hospital and going, you might need to get here. Yeah.
Dora (35:54)
Yeah.
Taylor Gilbert (35:54)
Okay, okay, yes.
Yeah, actually, yeah, but it doesn't
happen that often, but we do have to be available 24 hours just in case a family is is we we determine the hospital determines that this family is ready to have this, you know, time sensitive conversation. So but yeah, that's that's been interesting just traveling around the state. mean, we cover part of two smaller states and one one larger state. So.
Samantha Butler (36:07)
Yeah.
Mm-hmm.
Taylor Gilbert (36:23)
But yeah, we might be driving all day. I've driven seven hours total round trip. We sometimes fly on jets to get to where we need to go quickly.
Samantha Butler (36:37)
The PJ.
Dora (36:37)
bit more
about the necessity of that, right, is, you know, social workers, feel like emergencies don't just happen between the hours of nine and five, right? And so something terrible or tragic could be happening to a family at any hour of the day. And while many of these conversations are happening between quote unquote business hours,
Taylor Gilbert (36:47)
Right, right.
Dora (37:00)
If a family is like, know what, we just cannot be in the hospital anymore, or we do not want our loved one suffering and being in this state on the ventilator anymore. And we want to transition to comfort care and it's midnight or two o'clock. We need to meet that family where they're at and make sure that we are attending to their needs in the moment, right? So.
We are on call. So we could get a call at any time of day to have to go and talk with this family, explore like, okay, you guys have made the decision that you want to transition to comfort care. And now it's our role as family advocates to either review with the family that their person registered, right? As an organ donor.
and made that decision that if they were ever in this tragic circumstance and no curative efforts were available, that they would want to save the lives of other people. So yeah, it's kind of wild that we could just get called out at any time of day. And it's ever changing and dynamic in that way, right? Because we just never know.
what you're walking into from day to day.
Taylor Gilbert (38:17)
Absolutely. Yeah.
And I feel like we say it's the easiest job. It's sometimes it's the easiest job we've ever done because we're literally not doing anything. Like I'm just at home waiting to be called out to go and, know, running errands and nothing's happening. But then sometimes it is the hardest job that I've ever done because these conversations can get really emotionally intense and, know, kind of navigating hospital staff dynamics.
Samantha Butler (38:18)
Yeah.
Taylor Gilbert (38:44)
and family dynamics and so yeah it is it is really fascinating work. Sam you have anything you want to add?
Samantha Butler (38:50)
Mm-hmm.
I do. I want to make sure that everyone understands that every OPO operates very differently. like, like, because we're so lucky that we worked for an OPO that loved that we were social workers and really let us be a social worker in that role. And, you know, I, we've talked about this a lot. I can't believe other OPs don't require that you be a social worker for this role, but I
Taylor Gilbert (38:59)
100%.
Samantha Butler (39:18)
I really want to specifically mention that as far as pay is concerned. So if we like have anybody that go that like lives in Kansas or Texas and goes online to look at these jobs, you know, they're not going to, they may not pay you. They may pay you like what someone with a, Yeah. Yeah. It's very different.
Dora (39:22)
Hmm.
Taylor Gilbert (39:28)
Yeah. We. Yeah.
It's very different. It's very different. Yeah, everywhere. Yeah. Yeah.
Yeah. That's a good. That's a good point. Yeah. So speaking of money, go ahead. Go ahead, Dora. OK, yeah.
Samantha Butler (39:42)
Yeah, yeah, I don't want to mislead anybody.
Dora (39:45)
Yeah. Can we go? I mean, it's okay if we go over a little bit, but I
think it's important for us to talk about like how we found how we found this job. If is that okay? Okay.
Taylor Gilbert (39:55)
Mm-hmm. Absolutely. mean,
you want to I feel like for me, well, Sam, Sam, was already Sam was already in this world. Whatever you knew about it. Well, Dora and I were which this is we're supposed to have this a separate a separate conversation about this. Me, you, Emily, about the advocacy that we were doing at the hospital we were working at.
Dora (40:00)
Yeah.
Samantha Butler (40:04)
I knew about it. Yeah.
Dora (40:12)
⁓ yeah.
Thank you.
Taylor Gilbert (40:19)
And I mean, Dora and I both worked on Saturdays. We were we were done. We were ready to leave.
Dora (40:28)
Taylor and
I, for context, Taylor and I were the only social workers in this particular hospital that we were working at on Saturdays. And we shared an office together and we got our stuff done. Like, let me just tell you, we are type A, we got our stuff done and we were, yeah, we were super efficient. But also because of that, we had a lot of downtime and a lot of time to talk and a lot of time to scheme and a lot of time to dream. Yes, exactly. A lot of time to dream.
Taylor Gilbert (40:40)
KAAAA-
Yeah.
and dream.
Samantha Butler (40:55)
scheming and dreaming.
Taylor Gilbert (40:57)
We're scheming and dreaming.
Dora (40:57)
Yeah. And,
you know, stay tuned for part two of this conversation about the advocacy efforts that we were doing. you know, we had been there for a hot minute and we were like, you know what, this is not the system that we want to be working within. We impacted and created a lot of change there, but we needed to just find something that was different, right? Yeah.
Taylor Gilbert (41:18)
and felt more aligned. feel like because both of
us, the work that we were doing in inpatient wasn't, we both don't, deceased donor working in organ procurement organizations, this is an end of life option for families. This is end of life work, grief work, bereavement. And that I feel like both of us, we felt like we were missing.
And so one day we're like, okay, this is what we want for a job. We want to work an end of life. We want to have a good schedule. We want to make more money. We want to do all these things. And then I don't even, I wish I knew when we talked about that because I don't know how long after it was that I did find this job, but yeah, I was just searching on local hospital job board.
and came across this job, donor and family advocate, and I was like, wait a second. First of all, transplant.
Dora (42:07)
And I thought Taylor lost
her mind because it was not listed as a social work position. It was not listed as like you needed a master's degree or an LCSW or even a BSW. It was 24 hour call. I was like, girl, what are you, what? just had, I was very skeptical.
Taylor Gilbert (42:33)
I know when I talked to our former manager and I was just like, wow, first of all, she seems awesome. And this job seems really weird and cool and like just different, just different. so one thing led to another. They were hiring two people, both Dora and I interviewed and they hired us and we started on the same day. They did.
Dora (42:55)
Yeah. I don't think they knew that we were besties.
Samantha Butler (42:55)
Hey
Taylor Gilbert (42:59)
No, they didn't know.
Dora (42:59)
Well, I think our farmer manager, she told me that she had a sneaking suspicion that we were close. part of the conversation that really got us very interested in the job was learning that we had unlimited time to support these families through their grief and trauma, and also that there was no quota, right?
Samantha Butler (43:00)
no way.
Taylor Gilbert (43:05)
Okay.
Dora (43:22)
I know Taylor and I were both very concerned of like, okay, well, is our job security or our pay going to be based on how many families say yes or no to organ donation? And that is absolutely not the case. There are no incentive tiers for us to have a family respond in a certain way to the conversation about organ donation.
Taylor Gilbert (43:42)
Mm-hmm.
Dora (43:47)
And that way, though it's not a social work position, we felt that it was very much so aligned with our values and our code of ethics.
Taylor Gilbert (43:54)
Yeah, yeah, definitely. Yeah, in terms of pay, let's just end. Let's just let's end with that money moment is stock salaries real quick. When I let I mean, I like I'm still working there. I'm a contractor. Like I work like a couple days a month. It's barely anything. But when I left Salaried, I was making one seven. What were you making Sam when you left last year?
Samantha Butler (44:15)
I
I was making 109 or 112. Can't remember.
Taylor Gilbert (44:19)
Okay, where
are you at now?
Samantha Butler (44:22)
Um, I took a pay cut, but because I'm in a state that doesn't have, um, state income taxes, I make more. Um, and I think I'm now at like 103, 104. Yeah. But my take home is more. Yeah.
Taylor Gilbert (44:35)
Okay. Door is over six.
Yeah. Yeah. Door is over six figures. So I mean, it is a good there. There are social workers out here y'all that are making over $100,000. But like Sam said earlier, the the the
just opportunity for this in terms of transplant organ procurement organizations. Like it really just depends on where you live. and also there's not, there's not transplant jobs always available where you might live. Cause there might not be a transplant center by you, or there might not be like an organ procurement organization, like hub by you. So, I don't think these, you know, jobs are just like anyone everywhere can get, you know what I mean? but.
Samantha Butler (45:16)
Mm-hmm.
Taylor Gilbert (45:19)
I'm curious, Dora, what would you, I don't know, like, social workers who are hearing this conversation maybe for the first time, you know, talking about money, you know how we're all about salary transparency and just like this money empowerment, like encouragement, what encouragement would you give to social workers who are just like trying to gain confidence in...
Dora (45:27)
Mm-hmm.
Taylor Gilbert (45:40)
I don't know, knowing that it's like okay for us to care about money and okay for us to talk about this, you know what I mean? Like why do you feel like it's important for us?
Dora (45:46)
Yeah, absolutely. Yeah, it's important for us. And, you know, if you guys have been following Taylor's podcast for a while, you know, if we're not able to take care of ourselves financially as social workers, then it is impacting our work. So I really do feel that self advocacy for ourselves, for our pay for our benefits for our quality of life in terms of work life balance.
has a direct impact on the people that we're serving. So we cannot uphold client advocacy without upholding self-advocacy, point blank. So it's all about knowing our worth, right? We are the backs of these organizations. We are the people that are charging head first into
Taylor Gilbert (46:33)
Mmm.
Dora (46:40)
someone having a crisis, right? Whether it's a patient or a staff member, right? Like we...
Taylor Gilbert (46:42)
Mm-hmm.
Right. Everyone else
Samantha Butler (46:46)
Hey
Taylor Gilbert (46:46)
is like, ooh, and we're like, we got this. Put me in coach. We're there.
Dora (46:48)
Totally. Yeah, absolutely.
Absolutely. And, you know, those aren't necessarily like the hard science skills that oftentimes get a lot of clout. But you know what, we know how to talk people through a panic attack. We know how to talk someone through suicidal ideation, mental health, trauma crisis, without adding further stigma to what they're experiencing. And
the older I get, the more I get into my career. It's like, that's a superpower. You know what I mean? To be able to show up for people with tenderness and compassion without making people feel alienated. so when we can own our piece of what we're bringing to these organizations and highlighting that specific skill set, whatever it is, that is going to
help the people that decide our pay scale or whatever, we realize how invaluable we are to whatever team we're working on.
Taylor Gilbert (47:51)
Mm-hmm. Yes. Absolutely. Yes. Both of these ladies, as well as myself, are big advocates for you to negotiate your pay. Like, it's okay for you to want to make good money in this work. Doesn't mean we care any less about... Am I ⁓ a broker to record talking about this? Maybe. I don't care. You're like,
Samantha Butler (47:52)
Absolutely.
Absolutely.
Who cares? mean,
the end, mean, then to Dora's point, we, especially in the medical system, we're doing all the stuff that nobody else wants to do. We're having all the conversations that nobody else wants to do or has the actual skills to do. And because of the nature of our work, we're more willing to take less because we care. And that's not to say that any of the doctors or the
Taylor Gilbert (48:24)
Mm-hmm.
Yeah. Right.
Samantha Butler (48:42)
you know, other clinical staff doesn't, but.
Dora (48:45)
But it's exploitation, right? We're not social doctors and nurses. mean, actually, I don't need to put disciplines against each other. Social workers are oftentimes exploited because we're compassionate and we care and told the BS messaging that, oh, well, if you care, it's not about the money. But that messaging would never be told to a doctor.
Samantha Butler (48:57)
Mm-hmm.
Taylor Gilbert (49:08)
Right?
Right, exactly. Yeah. Awesome. Oh my gosh. I mean, we didn't even talk about living donors, but that's another thing you can... Social workers work with social workers working with living donors. mean...
Samantha Butler (49:23)
I know. Being a living donor is important. That's the message.
Taylor Gilbert (49:33)
In the transplant world, it's like you could be a bereavement coordinator. You could also do therapy with recipients. Like there are a lot of different roles that we didn't even touch on that you can do in the transplant world. So definitely if it's interesting to you, feel like, yeah, explore it. And like you were saying, Dora earlier, just like these niche medical.
Samantha Butler (49:38)
Mm-hmm.
Taylor Gilbert (49:54)
These niche medical specialties, yeah. And I feel like we both heard that from Sam, well, the first time I met Sam, what you said something about like, niche social work is where it's at or something like that. can't, you know what I'm talking about? Probably.
Dora (49:54)
specialties.
Samantha Butler (49:56)
Mm-hmm.
Probably. Yeah, I probably went off on my rant about like, these other jobs are gonna kill you, but if you can like
be in specialty or a really niche job, it'll keep you curious, it'll keep you engaged, it'll keep you learning and like that to me is what actually counteracts all of the stuff that you download and you carry with you. To me, like that's the stuff that you know, because...
Taylor Gilbert (50:23)
Yeah.
Yeah.
Samantha Butler (50:33)
How often do you have a patient that is thanking you or that you actually see get better? And so, you know, when you're in grad school, you kind of go in with this mentality that you're going to change the world and you're going to do all of these things. And I had to find another way to like counteract that, to keep me going. And that's why I say like specialty social work, finding like these niche areas will keep you curious, engaged, and you can find a way to.
Taylor Gilbert (50:52)
Mm-hmm.
Samantha Butler (51:01)
Do the best work that way too.
Taylor Gilbert (51:03)
Mm-hmm.
Mm-hmm. Yeah, I love that. Awesome. Well, thanks, y'all. Thanks for sticking it out with me here again, ⁓ Sam. And yeah, if you've listened this far, I would love to hear your recommendations for new podcast episodes. I made a little quick form, Google form. If you have something that you want us to, mean, Faith and I, we're just we're talking about things we think
Samantha Butler (51:11)
Always.
Taylor Gilbert (51:29)
people want to hear about. I've gotten a few messages here and there of like, could you guys talk about this? But I'd really love to know what people are wanting to hear this year. And so in the show notes, there will be a little link to a Google form for you to fill out. So yeah, we'd super appreciate to hear from you. And with that, thanks for listening and we'll be back in two weeks.
Samantha Butler (51:32)
BLEH
Dora (51:49)
Thanks for having us, Taylor.
Samantha Butler (51:51)
Thank you.
Taylor Gilbert (51:51)
Yeah