A Nurse Reflects On The Privilege Of Caring For Dying Patients | WYPR

A Nurse Reflects On The Privilege Of Caring For Dying Patients

Sep 28, 2015
Originally published on September 28, 2015 3:47 pm

Palliative care nurse Theresa Brown is healthy, and so are her loved ones, and yet, she feels keenly connected to death. "I have a deep awareness after working in oncology that fortunes can change on a dime," she tells Fresh Air's Terry Gross. "Enjoy the good when you have it, because that really is a blessing."

Brown is the author of The Shift, which follows four patients during the course of a 12-hour shift in a hospital cancer ward. A former oncology nurse, Brown now provides patients with in-home, end-of-life care.

Talking — and listening — are both important parts of her job as a palliative care nurse. This is especially true on the night shift. "Night and waking up in the night can bring a clarity," she says. "It can be a clarity of being able to face your fears, it can be a clarity of being overwhelmed by your fears, and either way, I feel like it's really a privilege to be there for people."

Sometimes Brown finds herself bridging the gap between patients who know they are dying and family members who are still expecting a cure. "There can be a lot of secrets kept and silences. ... One thing that palliative care can be really good at is trying to sit with families and have those conversations," she says.

While some might see her job as depressing, Brown says that being with people who are dying is a profound experience. "When you're with people who die ... and being in their homes and seeing their families, it's incredible the love that people evoke. And it makes me realize this is why we're here; this is what we do; this is what we give to each other."


Interview Highlights

On cutting costs and stretching nurses too thin

There's a sense that you can stretch a nurse just like an elastic band and sort of, "Well, someone called off today." That means a nurse calls in and says that she's sick or her car broke down or he won't be there, and sometimes we're able to get someone onto the floor to take that person's place, but often we're not. Or an aide might not be able to show up for whatever reason, and then the assumption is just, "Well, the nurses will just do all the work that the aide would've done," and the problem is that people do not stretch like rubber bands, and even rubber bands will break if you stretch them too far.

On loved ones wanting to feed their dying family members

Food is so fundamental, and their feeling is "I'm letting my husband starve to death and that's wrong." So I have to talk them through the process of the body slowly going in reverse. All the processes we think of as normal and that are integral to life, they're all slowing down. And so the body just doesn't need food when someone gets very close to the end of their life and, in fact, they found that forcing someone to eat can mean that they just have this food sitting in their stomach, they're not able to digest it, can actually make them more uncomfortable. So I talked to [one family member] about that, but tried to do it as gently as possible, while also acknowledging the incredible love that was motivating her and trying to honor that, but make it clear that she needed to show her love by being close with her husband, by holding his hand, by talking to him, but not by feeding him.

On whether patients ask if they're dying

No, they don't. ... I think it's because they're afraid. They want to just take things day by day. I did have a wife once ask me. She said, "You know, I'm not new to this, and I want you to just tell me. Is he dying?" And at that point I was a pretty new nurse and I didn't have the experience to know to say, "Yes." Now I would know to say that. ... I got a sense that she really wanted to know and no one else was telling her. ...

Physicians can have a mindset of "we're thinking positively, we're focusing on the good that can come, and we're not going to talk about 'what if it doesn't work out.' " And they will sometimes pull the nurse aside and say, "What's going on?"

On leaving the hospital setting for palliative care

I love the hospital. I never thought I would leave the hospital, but I left to see patients outside the hospital because in the hospital I feel like we never see people at their best. They feel lousy. We wake them up at night. We give them no privacy. We give them, really, almost no dignity. We tell them what they're going to do when, what they're going to eat when, what pill they're going to take when and no one likes living like that. ... So I wanted to see people in their homes because I thought there's got to be a way we could make the hospital better. Seeing what it's like for patients in their homes I thought would show me that. And I would say overwhelmingly what I've seen is control: People have so much more control when they're in their homes and it should not be that hard to give them back a little bit more control in the hospital.

On traveling to a patient's home

When I started, I thought, "I can't believe I'm doing this. I can't believe I just drive up to these houses and go inside them." I live in Pittsburgh, but it can get very rural feeling actually pretty quickly, and I remember ... going to [a house] that was already through back-country roads and then down a gravel driveway, and I thought: "What am I doing? Am I insane?" And then I went into this house, and this family was so loving and amazing and wonderful, so it was a great education for me not to judge. And I know that my workplace checks out and makes sure that the places we're going are real, so that's comforting, but it's definitely a giant leap of faith, and you just have to make that leap.

On home care versus hospital care

Often in the hospital they can be more comfortable in terms of we're relieving their pain, we're getting them anti-nausea medications very quickly, but ... they're not as comfortable with themselves, and in their homes they seem much more comfortable with themselves and with the people around them, and I had never thought about those two things as being so distinct, but they are. So the question then is how do we give people care that marries those two things, because they're both so important.

On how patients express appreciation to nurses

A very popular gift in my hospital was Starbucks [gift] cards. ... Often people bring in cookies and chocolate and that's wonderful, but I remember one nurse saying, "You know, I wish someone would just bring in a lasagna." ... Because we never have time to eat and then you go into the break room and you're hypoglycemic and you see all this chocolate, and so you eat all this chocolate, which doesn't really help you feel that much better in the long run. So to actually drop off a meal is wonderful.

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Transcript

TERRY GROSS, HOST:

This is FRESH AIR. I'm Terry Gross. If you've ever been hospitalized or spent time in the hospital visiting someone you care about, you know how important the nurses are. The doctors make rounds but nurses are there all day and night. And the difference between a caring, attentive nurse and one who's just going through the motions makes a huge difference in the recovery and comfort level of patients under their care. My guest, Theresa Brown, decided to become a nurse in her 30s, after having taught English at Tufts University. She spent years as a hospital nurse, working with cancer patients, including patients who had bone marrow or stem cell transplants. Now she does home palliative care. She's written op-ed articles about health from a nurse's point of view for The New York Times and has just written her second memoir about nursing. It's called "The Shift: One Nurse, Twelve hours, Four Patients' Lives."

Theresa Brown, welcome to FRESH AIR. As medicine has changed, nursing has changed with it. You've had to do things as a nurse that your predecessors in nursing would not have had to do because the technology - the forms of chemo - didn't exist yet. One of the things you've done is work on a bone marrow replacement ward as a nurse. So there you were seeing patients who were at their absolute most vulnerable because - why don't you describe what the procedure is - a bone marrow transplant - like how it basically kills the immune system.

THERESA BROWN: Right. So a bone marrow transplant is technically what we call a rescue treatment, which refers to the fact that we've given the patient's such an extensive amount of aggressive chemotherapy that we have completely obliterated any trace of an immune system in their body, including what's really at the core of the bone marrow - the part of our body that makes all the different blood cells. So then we give people an infusion of bone marrow. And now, actually, it's stem cells, but we still call them bone marrow transplants. We give that infusion, and the idea is that it engrafts into the patient's bones and gives them back a new immune system. But there's a long period there - long for being in the hospital - when they have no immune system. They're completely vulnerable. They don't have platelets, which we can give them through transfusions, no red cells. They don't have enough of those either. We can also transfuse those. But the really important thing is keeping them safe because it's so easy for them to get sick. And if they get sick, they get really, really, really sick.

GROSS: They have no defenses.

BROWN: Right. Right.

GROSS: So what are some of the things you have to do for patients who've had those transplants that you wouldn't have to do for other people who actually have immune systems?

BROWN: Well, one thing is geographic in terms of the hospital unit. Those patients stay in a part of the floor that's behind double doors on both sides. Their doors stay shut. The doors are actually alarmed, and we keep positive air pressure inside so that when the door opens - say there's someone out in the hallway who has the flu who is coughing - the positive air in the room will keep those germs outside the room. And the rooms actually have this hideous alarm if the doors are left open. Lots of hand washing, being very careful with gloves. Anything that's going into their body we have to be very careful with, so pretty much all of them have permanent intravenous lines. We've got to always alcohol them off before we give anything, make sure that we change IV fluids on a set schedule so that nothing's hanging around that could contaminate them.

GROSS: And what about the kind of personal care that you provide patients after a transplant?

BROWN: Lots of watching and observing and talking and figuring out - how are you feeling today? People can get terrible mouth sores. We're also really watching out for fevers and just any signs that someone is not feeling good. Often, it's a false alarm. It's because they're exhausted and they need a chance to get more rest. But you've really got to pay attention to that nagging sense of - I don't think something's going right here because a fever can very quickly turn into a full-blown infection. And if one of these patients - we call it spikes a temp - we'll start antibiotics on them right away because they've found if they waited until they drew blood cultures and found out what the person was actually infected with, they ended up dying. It was too slow a process.

GROSS: One of your patients, who you describe in your book, brought in a lot of, like, Clorox wipes. And right before the procedure - right before the bone marrow transplant - she had her friends and family just, like, wiping down the floor and the walls and the bed railing and everything with the Clorox wipes. And you make it seem like the nurses thought, like, gosh, she's just, like, a real handful. She's, like, too much. But then, she actually finds - or one of her friends and family finds - a dust ball underneath the bed. It's, like, dust and hair, and it's exactly what should not be in the room. And she presents it to you and says look what I found. This is, like, totally unacceptable. And by the way, change the shower curtain because that looks dirty, too. Was she already in one of those special rooms?

BROWN: She was already in one of the special rooms.

GROSS: See, that's terrifying.

BROWN: It is. And this person did that. And she's not the only patient who's done that either. We've had other people come in with Clorox wipes and cleaning rituals. And we do look at people like that as being annoying and, as you said, too much. But the truth of it is, there's a reason for them doing what they're doing. And unfortunately, it might be needed in cases, which is terrible to admit.

GROSS: So what did you do when the patient presented the dust ball to you?

BROWN: (Laughter) Felt mortified, and there's nothing I could say. I'm sorry doesn't really cut it. Wow, guess we should have cleaned your room a little better. What can you say? That's absolutely wrong and the hospital had gone back and forth from cutting the amount of cleaning staff to save money, and then we would have situations like this. Even worse, I had a patient's family member who found a really, really dirty bathroom and was constantly complaining about the state of the visitor bathrooms and that even her husband's bathroom was dirty. And there's no excuse for it and I can't explain it, except to say that it's really, really wrong-sided to think that saving money on housekeepers is a good way to save money. It's absolutely not.

GROSS: Well, you don't want them to save money on nurses either. You've been through that, right? What are some of the cost-cutting measures at hospitals you've worked at that have affected nursing care?

BROWN: Yeah, there's a sense that you can stretch a nurse just like an elastic band and sort of - well, someone called off today. That means a nurse calls in and says that she's sick or her car broke down and - or he won't be there. And sometimes we're able to get someone onto the floor to take that person's place, but often we're not. Or an aide might not be able to show up for whatever reason, and then the assumption is just - well, the nurses will do all the work that the aide would have done. And the problem is that people do not stretch like rubber bands, and even rubber bands will break if you stretch them too far. So I can't put my finger on - oh, at this point I was overworked and this terrible, terrible thing happened. It's not that dramatic. But it's - you can have a whole cascade of little details that add up to - wow, someone really didn't get the care they needed.

GROSS: So when you were working in oncology in the hospital, did you have to administer chemo?

BROWN: Yes.

GROSS: What's it like knowing that the medicine that you are infusing your patient with might really help them - is maybe even likely to really help them - and at the same time it's going to cause, in the short term, pretty bad side effects?

BROWN: It's intense. And we go in and give chemo with special thick plastic gowns on and two layers of gloves. And I've...

GROSS: Well, because it's that corrosive?

BROWN: Yes. Well, we worry about spatter or spray or accidental overdose over time. They didn't use to require that oncology nurses wore that level of protection, and then testing showed that there was exposure. The concern is, if you're doing this four or five, six times a week - could you get enough in your system to make a difference? So I've had patients say to me, what does that mean that you're dressed like that and you're putting that right into my vein?

GROSS: That's a good question.

BROWN: It is a good question. And I would always say, well, they're worried about cumulative exposure. And they would - depending on the patient, some would say oh, I get that and some would say uh-huh, right because they know - they know these are hard drugs. And I just tried to focus on if they don't get this, they'll die. And also, I wish we had a better treatment that wasn't so toxic.

GROSS: If you're just joining us, my guest is Theresa Brown. She's a nurse who's written a memoir called "The Shift." Let's take a short break here, then we'll talk some more. This is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: If you're just joining us, my guest is Theresa Brown. She's a nurse who's written a memoir called "The Shift." And basically, it's the story of four patients that she's taken care of.

You compare the day shift and the night shift as a nurse. And you write that it can be quieter at night. And that can be very nice to, like, watch the patients sleep in their most peaceful moments. But it's also the time when a lot patients plumb their deepest fears and talk about death. You say, in the darkness, the possibility of dying becomes less scary for some. But I'd imagine it becomes more scary for a lot of people. A lot of people get more afraid of the things that haunt them at night. What do you do when that happens? Did you want to be the kind of nurse where people would feel comfortable talking with you about those fears? And, if so, did you have the time to listen?

BROWN: The nice thing about night shift is you will usually have the time to listen if those fears come up. And I definitely want to be the kind of nurse people can share those fears with. Night and waking up in the night can bring a clarity. And you're right. It can be a clarity of being able to face your fears. It can be a clarity of being overwhelmed by your fears.

And I remember one night shift, a very long-term patient we all knew very well, who just slowly was - really just not going well. And it was obvious things were not going to be okay. And he needed to go to the bathroom in the middle of the night. And his wife was there. His wife was always there. His wife was incredibly dedicated. And she just didn't want to help me help him go to the bathroom, even though she did it all the time. And I realized this woman is exhausted, and she just wants someone to come in one time and take care of her husband for her. And so I was glad that I could do that.

GROSS: Do people often say to you, I don't want to tell this to my family, but I'm really afraid of dying? I don't want scare them, so I don't want to talk about it with them. But I need to talk to someone.

BROWN: Actually, I see more people who know they're going to die, and their family doesn't want to hear that. And I suppose it might be - maybe that's the sort of story I elicit from people. But they usually have a sense that the end is coming, and it's really going to hurt the people who love them. And so that's a real impasse.

And there can be a lot of secrets kept and silences, and that's one thing that palliative care can be really good at - is trying to sit with families and have those conversations 'cause it often goes that the patient knows it's not going to be all right, and the family is just not on that page yet.

GROSS: You tell a story - and I think a lot of people have witnessed this - of a woman whose husband was dying. And she couldn't really accept that he was dying. And he had been refusing food and water, as many people who are dying do. And she was a good cook and felt like that's what you do for family. You give them food. And it awakens them and nourishes them. And she tried to feed him, and you had to intervene and explain why that was such a bad idea. What did you tell her? What do you tell family members when they try to feed someone who's dying and can't really eat anymore?

BROWN: That is such a great question because it really plagues people. Food is so fundamental, and their feeling is I'm letting my husband starve to death, and that's wrong. So I have to talk them through the process of the body slowly going in reverse. All of the processes we think of as normal and that are integral to life - they're all slowing down. And so the body just doesn't need food when someone gets very close to the end of their life. And, in fact, they found that forcing someone to eat can mean they just have this food sitting in their stomach. They're unable to digest it. It can actually make them more uncomfortable.

So I talked to her about that but tried to do it as gently as possible, while also acknowledging the incredible love that was motivating her and trying to honor that but make it clear that she needed to show her love by being close with her husband, by holding his hand, by talking to him but not by feeding him.

GROSS: When you were working in palliative care, was that a separate palliative care unit, or was it like a hospital room that could accommodate regular care or palliative care?

BROWN: We would integrate it with oncology. It's very appropriate to do it with oncology, so a lot of symptom management - vomiting, pain - but then also having these bigger, harder conversations about, what do you want. And they've actually found through research that, if patients get palliative care along with curative care, they actually do better. Their quality of life is better. They live longer. So it's really, really important to be integrating that. And the problem is sometimes oncologists can be just - go, go, go, go, go. And they're not thinking about what the patient is going through physically and emotionally. And now we're learning we need to address that so that people can do as well as possible.

GROSS: I don't know if this is still the case, but I know - and you can tell me (laughter) if it is - but I know for a long time to accept hospice care - that kind of palliative care - you had to sign off medical interventions other than palliative ones. And that's a scary thing to do. It means, like, you are definitely going to say I am dying, and I don't want any kind of health care except palliative. And a lot of people, I think, were afraid or unwilling to sign away other options. You're talking about integrating medical care and palliative care so you don't have to make that choice. For hospice, do you still need to make that choice?

BROWN: You do still have to make that choice. And, in fact, they're making the restrictions even tougher. So I've had patients who, most likely, will die in six months because they have a number of severe chronic conditions, but they don't technically meet the criteria for hospice. So not only, now, do you have to give up any curative treatment, you also have to meet a very narrow definition of imminent mortality. So I'm not quite sure why we're headed this way, bureaucratically, as a country, in terms of how we enforce what gets paid for and what doesn't in health care. It definitely feels like the wrong direction to go in. And, yes, people feel like choosing hospice is choosing death and especially when we put it in these terms of you can have curative treatment or you can have hospice, there's a big, big reluctance to even think about, well, could I be doing other things that could make me feel better while I'm suffering with this disease?

GROSS: Is this like a cost-saving measure?

BROWN: I guess it's a cost-saving measure. I think it's more the result of people not understanding that we need to have more of a sense of a continuum. And so we get this idea that we're going to do chemo, and we're going to do chemo. And if the chemo gets you two more weeks, even if you spend it in the hospital feeling like you want to die, then that two weeks was worth it. We need to have a mind shift that says, you're going to have two weeks left. How do you want to spend them? Very different question.

GROSS: Have you tried to give honest advice to patients, even when the advice is, like you were just saying, you've probably only got two weeks left - do you want this chemo, which is just going to make you feel worse? I mean, how blunt are you with patients when you feel like you can see the end? But, on the other hand, you don't want tell them what to do.

BROWN: Right. I usually ask them what they're thinking about. And people will get there - most people. And interestingly enough, I've even had patients who I was signing up for hospice - this was after I started home care and was doing home hospice - who said, OK, I want to be dead in five days. This one guy said to me - Theresa, can you do that for me? I'm counting on you. (Laughter).

GROSS: Was he kidding or serious?

BROWN: I think he was serious.

GROSS: What'd you say?

BROWN: I said, well, we'll see what happens. (Laughter).

He had a lot of pain, and he was really tired of being sick. The other thing is, once he was on hospice, most likely, we could have really treated his pain, and then he might have changed his mind. So that's important. No one should be wanting to die because of pain if we still have options for treating their pain. Sometimes, though, we treat and treat and treat people's pain, and to make their pain go away, it's at a level where they're really just not conscious anymore. And that's hard for families.

GROSS: My guest is Theresa Brown, who's just written a memoir about her experiences as a hospital nurse caring for cancer patients. It's called "The Shift." After a break, we'll talk more about taking care of patients who are dying, and we'll hear from French actress Juliette Binoche. I'm Terry Gross, and this is FRESH AIR.

(SOUNDBITE OF MUSIC)

GROSS: This is FRESH AIR. I'm Terry Gross, back with Theresa Brown, who became a nurse in her 30s after teaching English at Tufts University. She's written her second memoir about life as a nurse called "The Shift: One Nurse, Twelve hours, Four Patients' Lives." She spent years as a hospital nurse, taking care of cancer patients. She now does home palliative care. Do patients often ask you if they're dying?

BROWN: No, they don't.

GROSS: Why do you think they don't? Do think it's because they know if they are?

BROWN: I think it's because they're afraid, and they want to just take things day by day. I did have a - a wife once asked me - she said you know, I'm not new to this. And I want you to just tell me - is he dying? And at that point, I was a pretty new nurse, and I didn't have the experience to know to say yes. Now I would know to say that.

GROSS: Why would yes be the right answer?

BROWN: Because I got a sense that she really wanted to know, and no one else was telling her. Physicians can have a mindset of - or, quote, "thinking positively. We're focusing on the good that can come, and we're not going to talk about what if it doesn't work out." And they will sometimes pull the nurse aside and say what's going on. The saddest instance I had of this was a patient who was doing very badly, who had had a stem cell transplant. And it just was not going well afterwards, which happens. This woman was so incredibly sweet, and I wasn't even her husband's nurse that day. But she came up to me and she said Theresa, I feel like everyone knows something that they're not telling me. And I thought, no one who loves their husband as much as she obviously loved her husband should feel like that.

GROSS: So you told her.

BROWN: I hedged because I wasn't her nurse, but I said things are not looking good and encouraged her to approach the nurse and the physician with specific questions. It's tricky because nurses can get in trouble if MDs see that we're introducing the topic of death and dying and they feel like it's not appropriate.

GROSS: How many patients would you have on your typical shift?

BROWN: Usually four - if we were very lucky, three. I chose to start the book with just having three patients to be able to talk about what a luxury that felt like. Four is standard, but we could go up to five.

GROSS: Is there a tipping point for you where you feel like it's more than you can handle while still doing right by each of your patients?

BROWN: I can't imagine having six. Having five is very, very hard. And in fact, one day, we had a nurse who wasn't able to come in at the last minute, and we were sort of divvying up the patients. And I said, well, I'll take one because it didn't look like the four I had were going to have that much going on. And then the one I took was actively dying and died much sooner than we thought. Another one was actually really sick and needed a lot. And unfortunately, I ended up almost completely ignoring this poor family who had had the family member die. And they were so incredibly generous to me about it. I'm not sure I deserved it, but I appreciated it. So yeah, you can get in way over your head and you don't realize it.

GROSS: I've been in situations where someone I love is in the hospital and something should be done that's not being done. And I chase after the nurse and say - explain what the problem is and ask her or him to please take care of it as soon as possible. And I feel like on the one hand, I'm being a pest. And on the other hand, unless I take some action, it's not going to get taken care of. And my priority at that point is making sure the person I love is getting care. How do you feel when I come chasing after you (laughter) in the hospital?

BROWN: Yeah. And I would say in an ideal world, of course, you are doing absolutely the right thing. I 100 percent approve. I think if you feel that's what's needed, go for it. And on my best days, I would be there for you and I would be empathic. If I'm already running around because someone needs a blood transfusion because somehow we didn't realize that they were really low and someone else has been screaming in pain and we just can't get the dose right and someone else is dramatically vomiting, I hope I would listen well. But I might be slow getting to what you want to do, unfortunately. We're all just a little busier than we should be.

GROSS: I've had experiences with good nurses and bad nurses when I've had loved ones in the hospital. And when a nurse is really good, you so much want to express your appreciation. And so my loved one who was in the hospital wanted to tip the nurse, and I said I think that's a bad idea.

(LAUGHTER)

GROSS: It's, like, they're not - they're not, like, your server at a restaurant. What's the protocol? Should you ever, like, tip a nurse? Are there gifts that are acceptable or unacceptable? What are some of the ways people have expressed their appreciation...

BROWN: Yeah.

GROSS: ...To you, for better or worse?

BROWN: Tipping I'm pretty sure anyone would turn down. It would just seem unseemly. A very popular gift in my hospital was Starbucks cards. We would love it.

GROSS: Oh, a gift card.

BROWN: Yeah, patients would leave gift cards. And there was some rule on the books - but no one ever took the trouble to find out what it was and it wasn't enforced - so we loved getting gift cards. And often people bring in cookies and chocolate. And that's wonderful, but I remember one nurse saying, you know, I wish someone would just bring in a lasagna (laughter) because we never have time to eat. And then you go into the break room and you're hypoglycemic, and you see all this chocolate. And so you eat all this chocolate, which doesn't really help you feel that much better in the long run, so to actually drop off a meal is wonderful. And we have had people order pizzas for us. We had a family where their daughter had died - a lovely young woman - and the mom sent in this catered lunch. And then she sent in a catered dinner for night shift because night shift often gets forgotten when we get presents, so food is - food is nice.

GROSS: Well, thank you so much for talking with us.

BROWN: You're welcome.

GROSS: Theresa Brown's new memoir about being a hospital nurse is called "The Shift: One Nurse, Twelve Hours, Four Patients' Lives." After a short break, we'll hear from French actress Juliette Binoche. This is FRESH AIR. Transcript provided by NPR, Copyright NPR.