Episode 14, Season 2: Lives left in caring hands?— A conversation with a palliative care social worker

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Tanisha Bowman is a support and palliative care social worker who serves within the UPMC Hospitals network. From the Source Host Jourdan Hicks speaks with Tanisha about the barriers that race and bias present for people faced with carrying out a loved one’s end-of-life wishes (or advance directives).The misuse of control by practitioners and the continuing legacy of distrust between Black Americans and medical care providers complicates an already fraught situation that most people are outright unprepared for.

Jourdan: It's a massive job to support patients and their loved ones facing life-limiting illnesses and end-of-life decision-making and care. It's something you may not think about often for yourself, but when we're at the end of our lives and decisions need to be made about our care and how we transition, we're going to need a representative to make those decisions for us.

Jourdan: In our previous episode of From The Source, you met Heather Bradley, executive director of Pittsburgh Bereavement Doulas. It was a conversation about how we can improve the environment in our city, at work and socially for families experiencing the loss of a pregnancy or an infant. This week, I super-duper look forward to you experiencing the thought-provoking conversation I had with Tanisha Bowman.
Tanisha: You know, dying sucks, but we're all doing it and none of us are prepared for it. I'm not even really prepared for it as much as I talk, but I don’t know.

Jourdan: Tanisha is a support and palliative care social worker in hospitals within the UPMC network. Tanisha's work is essential. She's the one who walks loved ones of a person who is dying through decisions you'll need to make about the medical care, medical directives, needs discussions and assessment needed to transition you to the end of your life on your behalf. The UPMC palliative support team Tanisha works with includes doctors, nurses, psychologists, social workers and clergy members. Occasionally, she gets asked to work with families who look like her Black families. So the palliative care support team can provide care and communicate in a way that is culturally aware and clear of miscommunication. At least that's the way Tanisha describes it as her understanding of why she's called in and when she's called to meet with families.

Tanisha: I personally am only going to go if I feel that I'm going to be able to provide some sort of comfort or companionship. If the hospital has done something that has led this family to believe that race is an issue in their care, I go in and I'm like, I align with them in a way, because a lot of times they’re right, you know. But I also have to toe this line of being the employee at the hospital that's not supposed to like talk shit about my employer, but, you know, aligning with them and hearing them out and and probably being one person that's going to authentically acknowledge their experience, not a uh huh , uh huh, okay it's like. Yeah, yeah, I know. I see it. I see it all the time, you know, like I can do that, but I think sometimes I assume that that's everybody's reason for for pulling me in.

Jourdan: Tanisha shared with me that sometimes she feels she's pulled in to meet with families, not to be a bridge for good communication, but to fake cultural competency and to be a decoy for doctors who attempt to use her race as a way to convince Black families to persuade them to do what they want to happen over what a family wants to do. Here's an example of a time this happened and played out on her job.

Tanisha: Like last week, I had a case where I hadn't been involved. There were other social workers involved. And all of a sudden they wanted me to come into this meeting. And I did a lot of work on the outside, but I had stayed away physically. And I remember before we went in, I went I don't know if I should go because I feel like because of some of the tension that's been happening and this patient's loved one already feels like you're judging them and aren't seeing eye to eye, somebody like me walking through the door is going to seem kind of patronizing. And I'm not sure how I feel about that. So I ended up going and it was fine. But every now and then I do have to play that. I have to play a game in my head. So in this particular case, I go in on Monday and it's been bad. So the family member is reportedly relieved to see someone that looks like them come through the door. Later on, when the family member got upset, all of a sudden a doctor that looked like her walked into the room that she had never met. She did not know what this person had to do with her mother's care. She was looking actively, looking for people that had been working on her mother's care. And all of a sudden this person walks in the room. So it's like, when is the minoritized individual being asked to see this family member, being asked to do it as a comfort? And when is it performative? And why don't they understand that the family knows the difference? And why don't they understand that that's fuel to the flame?

Tanisha: I just, I don't, they don't think about the optics and they get freaked out when emotion comes out, this family is very emotional and it was very clear from the day I walked in that the trust was gone. And I, and I said I came out of the room and I was like, yes, she don't trust you. listening to what's happened, I don't think I would either. Doctors know the system is racist. The majority of them, but I think the problem is they don't seem to realize that they could be the problem. They could be the person with the bias. So when confronted by an angry family member, I didn't do anything, I didn't say that, I didn't mean it that way. Sometimes I have to say it doesn't matter what you meant. It just matters how they experienced it, because that's how they, that's the lens they're going to see the rest of everything with. So if things are bad and you guys aren't communicating and you are acting frustrated and then you send in the Black, the one Black person, then, yeah, they're going to feel patronized. A lot of times my team is called in when they want us to convince someone that what they're saying is right, maybe they just don't understand, maybe you guys can find the words to convince them that we're right. The problem is you might think that this Black family doesn't understand the words that just came out of your mouth. They understand. They don't agree. They understand. They don't trust you. It's not that you need to find the right words or the right colored person to come into the room. It's that you guys don't see eye to eye, end of story. So they could know their family member’s dying, but maybe they don't want their family member to go out the way that you're offering. Right? So it's not only like I don't want, my loved one wants to go out fighting, My loved one wants to go out as alert as possible. I don't want you giving them these drugs that are going to make them sleepy that I read about online that, you know, are going to make them die faster.

Tanisha: But also on the flip side, these doctors say all these things like we're going to make your family member comfortable and the family says, OK, so behind the scenes, we change their code status, their comfort measures only. Unfortunately, some providers see that CMO and they don't think the person needs to be cared for anymore. Like you would hope that that's not the impression that people get. But you can see sometimes let's be honest in the care that once that comfort comes on, they think everything comes away. And that comes, I think that comes from us calling it withdrawing care like you're taking away. But in real life, comfort means adding, like you might be taking away stuff that's not making them comfortable and that's not needed. But you're adding medications that make them comfortable. You're adding a closer look at managing their symptoms instead of trying to fix them. So it's not, you're not withdrawing the care. You're still going to care. But if you don't spell out what you're doing. And all of a sudden, the family realizes all the medications the person's been taking for years just went away, and they don't understand why that's not OK. If they don't understand that, that comfort means we're going to turn off that monitor because we're not really going to be checking their blood pressure, their heart rate anymore because we don't need that. So many, so many disagreements happen because things aren't spelled out. And I think, you know, living in the medical world, you feel like people know what you mean, but they don't. They don't know the ramifications of what you're asking unless you tell them. And then if you're in the ICU, you don't have time to tell them. You know, people get upset. And then you were like, what? You said you wanted this. And it's like, well, I said I wanted that, but I didn't know that came with it. I don't know.

Tanisha: I lasted a year in the ICU and I was like, I don't think my soul can take this because it's so hard for that. It's so weird because it's so hard for some of these doctors to be like, OK, there's nothing more we can do. And they want to keep doing stuff and keep doing stuff and keep doing stuff. But on the flip side, when they feel like there's nothing more they can do, there's nothing more they can do. Get him out of here. Take the patient and go put them someplace else. Problem is, when that happens to someone at end of life, it means a move. So like they they might have to move to a completely different part of the hospital. Families don't always want their loved ones to move. They're comfortable that they keep them here. They're comfortable. But the thing is, I mean, the rooms are built differently, but there are people that need the care and the ICU. And once you are ‘comfort measures only’ you don’t need to be there anymore, if there's a chance that the person is going to die relatively quickly, then they'll let them stay. But what then happens if they don't die quickly? Then they're like, well, what are you going to do about this person?

Jourdan: What I feel and, tell me if I'm wrong, what I'm feeling is, is like there needs to be less ego and more care when it comes to death and dying. I feel like agency needs to be respected more when it comes to, like, time. I know that time is a factor and we have to make these decisions and things are happening. And care doesn't stop, a hospital is 24/7 need, 24/7. But there needs to be, it needs to be figured out somehow.

Tanisha: Right. So first of all, our job shouldn't have to exist. All providers should be able to palliate. We should be trying to make our job obsolete. And in a way, we are by doing pilots in the ICUs where it's like this is how to have a family meeting. This is how to have discussions. Palliative care providers get a ton of communication training that all medical providers can access and should access to learn how to have sensitive conversations, to know how to be culturally sensitive, to understand how to talk to people. Because it's a skill. You know, it is just like them being surgeons or whatever they are is a skill that they have to learn. If you don't take the time to learn it, and you can tell. I mean, we have, you know, residents and interns that come through the palliative service line to learn. And when I see them again, you know, on their normal unit, you can tell there's a difference that they've taken something away, a sensitivity away. But time is also a big thing, like you said, because getting someone out of the hospital to go to a nursing home to get stronger to, you know, skilled therapy or whatever, it makes sense to be OK. You got like five places that said yes to you. You're probably not going to like any of them, but you need to go. We're not, there's nothing that we're doing here for you. This is an acute care setting. You're ready to move on, pick someplace. And so there's a little bit of a forceful kick in the butt sometimes. My problem is that when it's one of my patients, if I'm dealing with it, they're probably going on hospice wherever they're going. It's not going to be a six-week stay. It's going to be this is the last place they live before they die. So family, I would like the family to be able to have a minute to, before COVID, look at the place, now kind of look at the reviews and talk to people that they know. And then there's the financial component, because the skilled therapy is covered by insurance and the hospice room and board may not be. So they might be trying to pick the most financially appropriate place and that takes time. But when you've got patients in the emergency room and there's, you know, there's a crunch for beds, they're looking at my comfort patient and going, well, why are they still here? And then I kind of have to go because I'm giving them a minute, you know, and there is that constant push and pull of we aren't doing anything for them anymore. They need to go. And I'm like, but I'm doing something. Give me a minute. Let me figure this out because I don't, I don't get to know what happens after they leave most times, but I would like to think that they've landed someplace comfortable and safe and the family feels like they've done everything that they can.

Jourdan: It's messy, right? Like, death is messy. But I feel like from what you're saying, death is messy, but we're not doing a great job of not making it even more messy, like spreading their blood around, getting it on everything.

Tanisha: Like our society as a whole has made it impossible because it's not, it's not just I know I've been dragging the doctors, it's not just the outside. It's us. You know, if you don't have your life together, when something happens to you, you are leaving those people that care for you in a really bad situation. If you have estrangements, if you have people that you don't want to have anything to do with you, you need to lock it down before you lose your voice. Because I don't know how many times I've had to find people, bring people into conversations that the person in that bed would never want involved. Don't be married and haven't lived with your husband for 20 years, because guess what? I got to find your husband because you're not divorced. Unless you've got paperwork separating you in the courts and you're in the process, don't you just move out that house. You better write it down and get it signed, because I will have to find them because they're number one on the medical health care proxy list. Like, I can't, there's nothing I can do about that. It is a law.

Jourdan: And so it seems like the laws, the guidelines for how we provide care as far as compassion and care, as far as medicine are of the old guard. Right. If you're not rich. If you're not...

Tanisha: Yes.

Jourdan: White. If you're not perfect, we're going to make it hard for you or it's going to be hard for you.

Tanisha: I just saw a really great tweet. It says, “The imagined palliative care patient around which policy continues to be formulated lives in secure housing with family support and is white middle class and male.” And that really just hit me because, you know, if you've got people who don't have to be at work because they're going to lose their job or whatever or who can just not go to work, then, yeah, you could take somebody home and have round-the-clock care. Somebody could be very well loved and have family and friends and church, but if those people can't put aside their life to help take care of them, then they're stuck. If they don't have money, but they have just too much money to get Medicaid, then they have to pay hundreds of dollars a day to live in a nursing home that they don't even want to live in. You know.

Tanisha: Where wealthier people go to the nicer nursing homes, so I've got people who deserve a four- or five-star nursing home, but they're full of people who had the money to get in there in the first place. Nobody wants to take a complicated, you know, poor person on, you know, they don't know if they're going to get their money or not. So then they're left with the one- and two-star nursing homes where nobody's taking care of their loved one. And it's COVID. Guess what? You can't go see them. I mean, but let's not get twisted. The people with the money also are not necessarily dying the way they want to die either, because there are so many layers to this. You know, white people can be estranged from their families, too. You know, it's, I think the unpreparedness, the misunderstanding. So you may have some sort of will, some sort of living will in your family member goes, hey, hey, hey, I got this paper. I'm their power of attorney and I flip through it. And there's nothing about medical power of attorney in there. It's all about their money. Well, that's good, because you'll be able to pay their bills. But your brother and your sister are all decision-makers because this paper doesn't talk about that. Well, they can't be trusted and they stole dad's money. And that's why, I'm sorry, I have to call them because this paper doesn't say otherwise. You know, or the problem is, yeah, me and my mom, we talked about this when my uncle died 20 years ago. OK, well, your mom was, what, 50 then and she's 70 now. What she wanted at 50 might not be the same thing she wants at 70, because CPR on a 50-year-old person is a lot different than CPR on a 70-year-old person. A 50-year-old person is going to heal those cracked ribs. A 70-year-old person might not ever come off that that ventilator that we put them on after we broke their ribs, you know, so even if we had those conversations, if we're not keeping them up, it doesn't matter what you knew 20 years ago, they might not want that anymore.

Jourdan: Nisha, answer me this. Answer me this with all of this knowledge, all of this insight, all of this experience, all of the understanding of policy, system, culture, protocol that you have an understanding of, why aren’t you somebody's president of palliative care? like, what's what's going on? Why aren't people appreciating you? Why isn't this knowledge and expertise being centered?

Tanisha: So the hierarchy of where I work is weird because I work for not the palliative care team, 'm kind of on loan to them. And it's an unusual situation and it's not like that at all the hospitals for my organization. So my palliative team docs have done a great job of of giving me opportunities to speak. I did my first grand rounds when I first got back from maternity leave in August. That was a big deal for me. I've done a lot of presentations and stuff, so there's support in that. The other problem is myself, besides imposter syndrome, I had a very traumatic childhood in that trauma has left me having a hard time believing in myself. There's this weird pull for me, because as much as I'm an introverted person who's really socially anxious when I talk about social work, when I talk about this particular topic, I'm like, I'm on. I also used to be in bands. I'm a retired Irish dancer. I'm a belly dancer. I'm a former pin-up model. I do all those things that put me in the spotlight. And then I get off the stage from where everybody was looking at me. You know, I'm trying to find that balance. And I love palliative care because it's helping the people that I ultimately want to help. My goal when I was 16 was to sit with the sad people. I don't know what that means, but I know that every now and then at work, I get to do that. You know, I get to hold someone's hand as it gets colder and colder as they're dying. I get to hold someone's hand as it's shaking, as they watch their loved one die. And then I leave work and I'm so heavy with emotion. But it's the best day I've had all week. I think it's growing up feeling like you're worthless, finding something that you're actually good at and I'm OK. I'm good at things, but for some reason with this, this is the first thing I can admit I'm good at. It's just so important to me. And I love learning more. The problem is, the more I learn, the more frustrating it is because it's so horrible. Everything is so horrible. But I can't not tell the truth. And this is how I experience the world that I work in. I know somebody else may experience it differently, but these are the barriers that I see on a day-to-day basis. And I can't say that it's not. It's just and I want to save somebody from this. I want people to go in informed because we don't do a good job of informing. We do a lot of assuming, we do a lot of paternalistic thinking. We place our Western medicine, Eurocentric values on everybody and then get upset when they don't match up with what the family and loved ones think. And it's always like we're right. They're wrong. You know, it's just, if people know that going in, they can be better prepared, and that's why I just keep shouting from the mountaintops like, guys, don't forget about this. Talk to your family members. You know, it's just, it's bad enough. Like we don't have to make it worse.

Jourdan: It's natural to fear illness, to be afraid of being out of control of your body, but we have to be brave in this and consider that we may not be conscious and clear enough to make decisions for how we'll transition. No one wants a death that they would consider inhumane, that isn't attuned to their spiritual practices and beliefs on how to do dying, disconnected from their cultural identities. Doctors, caregivers, people representing you in your advance directives, you're going to need everyone to be on the same page for that.

Jourdan: In Pittsburgh, I'm hearing that there is room for growth for many doctors to understand the racial barriers, to understand their biases, to understand the emotions that families are experiencing, and to center that in the care that they provide. Until then, it seems like the onus is going to be on families to make sure that you have a palliative care plan in place, just in case.

Jourdan: Here are some questions to ask yourself as you plan for the issues that one would face at the end of your life, questions that could be helpful to answer ahead of time:
Who would you pick to make health care choices on your behalf if you're not able to?
Do you want to be at home or in a hospital or someplace else at the end of your life?
Do you have a trusted friend or family member or a power of attorney to pay your bills and to make the financial decisions on your behalf if you're unable to?
Do you have a will in place filling out your wishes?
Tough questions, but necessary questions. You're the only one who's going to have all the answers to these questions. You are the only one who knows what you want.

This podcast was produced by Jourdan Hicks and Andy Kubis and edited by Halle Stockton. If you have a story you'd like to share, please get in touch with me. You can send me an email jourdan@publicsource.org. PublicSource is an independent nonprofit newsroom in Pittsburgh. You can find all of our reporting and storytelling at PublicSource.org. I'm Jourdan Hicks. Stay safe and be well.

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