TRANSCRIPT

Real Talk about Hospice and Palliative Care

Interview with Lauren Marcewicz, MD, Palliative Care Physician

(Podcast #038)

Introduction

Dr. Lauren Marcewicz  00:00

I mean, I think the other problem is that sort of in our culture, we talk around death a lot. We don't, you know, we don't say the word we don't talk about, what are your dying plans? So we talk around it a lot. And I think that happens for families who are confronting it as well, there's a lot of talking around it. You know, like, like the whole question, what do you want to do? What do you mean, what do you want to do? There is no what you want to do, you're dying. So... and I think people are probably not as honest with with each other and with themselves as they as they could be? And that that leads to people struggling with sort of what next steps to take, and where do we go from here.

 

About the Psychology of Aging Podcast

Dr. Regina Koepp  00:48

I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to include older adults in conversations about mental health and wellness. And here's why this is important. When we're all a little more informed about mental health for older adults, we reduce suffering and improve quality of life. And who doesn't want that? So join me, it's simple. All you have to do is listen, be willing to learn, and then share what you learn with others so that they can be included in this conversation, too. Alright, let's get started.

 

Work with Me

Dr. Regina Koepp  01:32

Did you know that by 2034, in less than 15 years, there will be more adults 65 and older than children under the age of 18, 20% of these older adults will have a mental health concern. And here's the thing. Mental health concerns are highly treatable. In older adults, there is a common misconception that depression is a normal part of aging. In fact, depression is not a normal part of aging. Mental health providers need to be skilled and thoughtful around the mental health needs of older adults. And I offer training programs that address just that. There are three main training programs that I offer. One is on mental health care of older adults, it's great for mental health agencies or mental health providers. The next is on sexual health and aging. But not just any sexual health. It's on sexual health in the context of dementia disorders. And what happens in the context of dementia disorders, when the person may have diminished capacity to make a decision around sexual interactions. That's great for senior care communities. And finally, on equity and inclusion in senior care, and this is great for mental health or senior care communities. If you'd like to learn more about my training programs, head on over to my website. That's www.drreginakoepp.com. I'll see you there and I hope that you check out some of the training opportunities.

 

About Dr. Lauren Marcewicz, MD

Dr. Regina Koepp  03:16

Last week, I had a very special conversation with Patty Webster from the Conversation Project. We talked about how to start end of life conversations. I'm continuing the conversation about end of life care today with Dr. Lauren Marcewicz.

 

Dr. Regina Koepp  03:34

Dr. Lauren Marcewicz has been a palliative care physician at the Atlanta VA health care system for the past five years. She's currently the physician program lead for palliative care site director for the Emory University School of Medicine hospice and palliative medicine fellowship, and adjunct assistant professor in the Division of palliative care, Department of Family and preventive medicine at Emory University School of Medicine. She also serves as a physician and the Georgia Army National Guard. In this interview with Dr. Marcewicz, we talk about end of life care. We talk about what it's like for the person at the end of their life, and also what it's like for families.

 

Dr. Regina Koepp  04:19

I hope that you listen to this very important episode. Because this is one experience in life we will all go through. It's universal. And while it might be scary, I want you to know, you're not alone. So join me and Dr. Marcewicz in this very important conversation. Let's get started.


 

THE INTERVIEW

Can you start by sharing a little bit about what drew you to end of life care?

Dr. Lauren Marcewicz  04:49

Yeah, I think I think that answer is so there's many facets to it. You know, and and if you ask me today, the things I'm Share might be different than if you ask me, you know, tomorrow or a week from now, I think the biggest, biggest thing that drew me to end of life care was the idea that I wanted to be with people in their most vulnerable periods that I just sort of wanted to accompany them through their most most vulnerable periods. When I was in medical school, the, you know, as a, as a medical student, you really are not able to be as helpful as you want to be. Because you don't really know what you're doing. And you're put, you're sort of there. And as a medical student, what I found was the times that I felt most empowered, and most helpful to people were the times when I when I would just sort of chat with them. I remember this guy who was going into surgery and was really nervous about going into surgery, and just just sort of sitting there talking with him about it now that the anesthesiologist gave him drugs, which was good. And I was like, oh, that I could I could be an anesthesiologist because this is a vulnerable period. Right. But but sort of, the more that I thought about it, the more that I thought, well, what what is what is literally the most vulnerable period of anyone's life. And that's the end of it. And and when they're facing death. And so that that was probably the biggest thing that that drew me to it. Hmm.

 

Dr. Regina Koepp  06:26

There's something about the vulnerability that really touches you.

 

Dr. Lauren Marcewicz  06:30

Yeah, I mean, I think it's all... so let's see if I can make this story relate. So, I was on the... I have a dog that I love very much and I took my dog to the beach. And so my dog and I are on the beach for like an evening, evening slash nighttime walk. And it was really dark and stormy. This is like April at the beach. So really dark and stormy. And there's no moon outside, no stars, or anything cloudy, the waves are going crazy. And we're alone out on the beach. So I've got my dog next to me, and I'm looking at the ocean. And I was like, that's scary. So very large, expansive, scary, you know, stuff out there. And I looked down at my dog. And my dog looked up at me. And I was like, kind of so glad my dog is here. And I just felt this incredible warmth. And I was just so glad that the dog was there with me. Hopefully, she was glad that I was there as well. But that I think like that's all that's basically all we can do for each other. We can just be there with each other during these scary periods. And in those spaces where people feel, how am I going to confront this alone? How am I going to do this alone? Well, you don't have to be alone. Nobody's alone. We all have people around us. And so that's really, I think, what it's what it's about.

 

Dr. Regina Koepp  08:02

Wow, that is a powerful analogy of the storm and the darkness and not knowing just kind of this, the vast expanse and then brewing storm and looking to your dog and your dog is giving comfort. And...

 

Dr. Lauren Marcewicz  08:16

Yeah. Right just the presence of... just her presence, this thing that I love, you know, it's not like I know what she's thinking. It's not like she knows, you know, but yeah, just to have that presence with me was really calming, really great.

 

Dr. Regina Koepp  08:38

And that inspired you to be that presence for others.

 

Dr. Lauren Marcewicz  08:41

Yeah, exactly. Exactly.

 

 

Memorable Experiences Being with People at the End of their Life

 

Dr. Regina Koepp  08:45

Are there certain end of life experiences that stand out to you and your career as an end of life physician?

 

Dr. Lauren Marcewicz  08:53

Yeah, how much time do you have?

 

Dr. Regina Koepp  08:56

Give me... I'll take your time.

 

Dr. Lauren Marcewicz  09:00

Yeah, um, yes, there are, there are myriad experiences that stand out to me, I sort of get to be with people in this end of life period. And then the things that they tell me in the end, the things that I witness, right, become my story. So, in many ways, their stories, to some extent become my stories. And I think carrying them forward is part of, you know, part of, I don't know, part of the work as well. But the story... so my favorite end of life story. The one that sticks with me probably the most is that there was this gentleman who we cared for - I work at the VA. So there was a gentleman that we had cared for, for a long time at the VA and we, at some point, we'll talk I think a little bit more about what Palliative care is and sort of what we provide for people but a lot of times we're with folks for, for their whole sort of disease process or for a long period of their disease process. So we had cared for this gentleman for a long time. And he was a Vietnam veteran, and he was very afraid of dying. And what he was afraid of specifically was that he would go to hell, because he felt like he had done some things in Vietnam that he was not proud of. Never wanted to talk about those things. And so he really, his fear of dying was really about a fear of being being punished. And not sort of experiencing love or anything like that. And so I was caring for him in the hospital, he ended up dying in the hospital. And sometimes what happens is when people... so there's a lot of strange things that happen when people die, doesn't mean that that always happens. But there's often a lot of sort of strange things that go on. And one of the strange things that can happen to people is that they can have like a, what we call sort of a lucid moment. So they'll, they'll look like they're dying and, and are sort of asleep and sort of out of it. And then they might sort of come back and be able to converse and be awake and be with people and then kind of go back to this sort of out of it, dying period. So he was on my unit started to look very bad look like he was dying. So I was giving him some medication to help him through that. Talked with his wife. And now I was like, I think, I think he's actively dying. And then, you know, I ended up going home for the evening. So she told me the next morning, when I came in that what had happened, what had gone on all night was that he was looking up into the corner and talking to somebody and sort of having a full on conversation with somebody. And he, at one point, grabbed her hand and said, see what I've done. See, I did this and he would talk about other things that I've got kids and would sort of come up with these things that he had done in his life, these good things. And then the next morning when I came in, and he was awake. He was like what are all these people doing here? What? How come? You know? How come my cousin is here? How come my family's here? What are you guys all doing here. So, they sat with him for most of the day, you know, and then he ended up passing. Later on that day, into the end of the evening, he sort of slid off into more of another kind of active dying period. And so for me what I, you know, it brought such closure for his wife, his wife and I both we had a conversation about this. I mean, I think we both had the idea that what was happening was that he was, I don't know telling whatever powers that be sort of your other good things, here are the reasons maybe why. Why not everything in his life was bad, or why he might deserve kind of not to go to hell, I guess. But it brought, you know, a couple of reasons that sticks out to me is one it brought such closure to his wife, she was able to feel like, um, like, things were gonna be okay. He felt okay. I mean, after like, so he came back in this lucid period was able to enjoy his time with his people. And then was not afraid to sort of then let go and move on. Um, and for me, as somebody who sort of witnesses something like that. I mean, it's just what an awesome you know, awesome story of finding wholeness at the end of life, I think... so that's, that's probably my favorite end of life story.

 

Dr. Regina Koepp  14:02

Oh, and integrating these disparate experiences in life from war to creating a family and, and sort of integrating war's place in his life with his Vietnam service. And then that his life didn't stop there. And his contribution to the world didn't stop there that he had all these other aspects of his life that he could put into one whole picture. Yeah, it's a really beautiful story that his wife got to see that journey and had some peace and she had some peace in the end with it. That's lovely. Yeah.

 

Dr. Lauren Marcewicz  14:40

Yeah. That's my favorite one.

 

The difference between palliative care and hospice

Dr. Regina Koepp  14:44

That stands out to you. Yeah. Um, well... So tell us about what you do on a day to day, like what is a palliative physician?

 

Dr. Lauren Marcewicz  14:55

Yeah, yeah. So palliative care, kind of the broad definition of what Palliative care is, is care that is aimed at trying to alleviate suffering, specifically the suffering that comes with having a chronic life limiting or life threatening illness. And we often talk about people suffering, you know, suffering isn't just physical, although there's that as well. But But suffering also happens in a spiritual plane, it also happens in the social plane. And it happens kind of, to our, to our emotional psyche, I guess, as well. And so, Palliative care is really about trying to address suffering on all of those levels. So my day to day work is  usually working with people who have some form of chronic illness, and that could be anything from cancer to, you know, heart disease, or bad lung disease. And I even work with people who don't have an end of life diagnosis, but have a diagnosis that's like head and neck cancer, for instance, is something that's really well treated, and we've got good ways to even cure head and neck cancer. But the treatment often carries with it so much symptomatology. And it really affects people's ability to lead their normal lives and changes the way people lead their normal lives. And so, so I'll meet with those folks in their family and try to figure out ways... try to figure out where suffering is happening and try to figure out ways to mitigate that whether that's through medications, or maybe talking to a palliative care psychologist or maybe talking to our social worker or finding other resources, or, or just hearing kind of what, you know, having somebody tell me what's going on can sometimes, I think, be therapeutic for people, too. So, that's a lot of what my daily work is with palliative care.

 

Dr. Regina Koepp  17:05

What's the difference between palliative care and hospice?

 

Dr. Lauren Marcewicz  17:09

And so, you know, both are, I guess I'll answer that question by talking about their similarities. Palliative care and hospice both focus on quality of life rather than disease management or changing the course of a disease. And both focus on function and quality of function, how people are able to live their life. Hospice is really something that's reserved for folks who, who are in their last six months of life. And, I mean, doctors are really bad at figuring out if you're in your last six months of life or not. So we've got certain things that we kind of look at. Hospice, I often tell people, it's reserved for periods of time where we don't think that any of the medicines that we're using can change the course of the disease. So, either the medicine's not helpful anymore. Or if people sort of feel like, gosh, this medicine is making things worse than it was, you know, before I started the medicine, that's really what hospice is reserved for. Palliative Care can happen at any point in a disease course. I mean, any at any point really from diagnosis onward. And what we normally say is that people, you know, probably need less palliative care and less focus, there's less suffering at the beginning of the illness than there is kind of at the end of an illness oftentimes. And so what people need from palliative care might increase with time, to a point where Hospice is sort of maximal palliative care, I would say.

 

I share one of my most memorable experiences holding a dying man's hand

Dr. Regina Koepp  18:47

Yes. A nice way of putting it. I was thinking about my favorite end of life story. I trained in hospice at the Palo Alto VA. And I remember I was bedside with a patient and his extended family came in, so not people who he saw regularly, not people who had been with him on the unit regularly. And I went in the room, just to introduce myself and to see how the patient was doing. He's laying in his bed, and he was nonverbal. He was sort of in active dying stage. And he had sort of kind of gruff, fully kind of crackly breathing and not responding to any conversation. His eyes were closed, he looked like he was sleeping. And I was holding his hand but he had a firm grip. So his family was sitting down and I was in talking with the family and him and kind of orienting them to how to engage with the person who's dying. And so I'm standing there and holding his hand and they're telling me stories about him. And I'm telling them, Oh, tell me about your loved one, like, tell me, tell me what your favorite memories are, so he can hear you and I can hear you. And so they are. And at one point, his hand is warm. And it's, I have small hands, I'm a petite person, his hand was like big, and it enveloped my head, and it felt so good. And then, but at one point, I put his hand back on to rest on his body. And was going to go, and I was asking, and the family was asking me, Should we hold his hand? And as I was going to go, he reached his hand back over to grab my hand and held it again. And I was just like, Oh, my gosh, if there is any question, if there is a person still in there, when the person is dying and not able to respond, if there's any question that has just been answered for me. And then I took his hand and put it in his family members hand so that they could have time because I'm not his... I mean, in those moments, because they're so intimate, I feel like he is my family. But, but technically, I am not. And I want his family to have time with him. So then I put his hand in his families, whoever that person was to him, in her hand, and, and just kind of held it there to kind of orient his hand to hers. And then I, you know, said goodbye and left. And it was just such a powerfully intimate experience that this person who's actively dying, knows the meaning of connection, like what you were saying in that storm, and that in some level, he's wanting to connect and have contact and humanity and warmth. And it was a, it was just a beautiful moment that will last forever for me, and hopefully, for his family that they get that opportunity with him, too. I think even at the moment, I don't even know if I remember this right. But in my mind, I'm thinking, I wonder, at that moment, we were even talking if he could understand or hear us, because families often have that question bedside.

 

Dr. Lauren Marcewicz  22:13

Yeah.

 

Dr. Regina Koepp  22:14

And, and maybe that's just something I'm making up now. But if that was a question in their mind, I hope that was answered then too, right? It's just, these end of life moments are so powerful, and they can be so simple, like hand holding, like, incredibly powerful. It's just a beautiful, beautiful thing.

 

Dr. Lauren Marcewicz  22:38

Yeah, there's a lot of meaning sort of wrapped up in a lot of the stuff that we do.

 

How does someone qualify for hospice care?

Dr. Regina Koepp  22:44

Let's go back for a second. So, how does the person get designated from palliative to hospice? So, I know there's their six month mark. But to qualify for hospice care, do two physicians have to agree that the person is....

 

Dr. Lauren Marcewicz  22:59

No, not really the way that it works... So Medicare, hospice is really a Medicare benefit. And that's where it comes from. And Medicare has sort of done the most research on hospice and everything. So Medicare has guidelines for kind of what, what qualifies people for hospice, and so that's different based on different diseases. So for instance, for heart disease, it's sort of intolerable symptoms. A patient is either not a candidate for advanced therapies, like a heart transplant, or an LVAD, or patient is optimally managed on all of the medication that they have, and kind of can still have symptoms, despite all of that optimal management. So those things have been associated with a six month survival, you know, in all of the Medicare data. And so what normally happens is, let's say a patient is in a hospital, or a patient is seeing their primary care doctor, the doctor who's taking care of the patient in the hospital, or the primary care doctor can make a referral to hospice, after you know, discussing it with the family or whatnot, and then what hospice will do hospice will look at kind of all the characteristics of the person and look at kind of the medical evidence and say, yes, this meets criteria, or no, this doesn't meet criteria. A lot of times what hospice will do as well is they'll, you know, they might be iffy about whether or not the patient meets hospice criteria, but they'll admit the patient to hospice and kind of see what happens over the next, you know, 60 to 90 days, as the patient sort of stabilizes, as the patient gets better then those things would mean that, you know, they're not at end of life. But if the patient kind of continues to deteriorate and they're seeing sort of worsening function and worsening symptoms, then you usually keep the patient on hospice. I've had people people graduate from hospice, I mean, I have had a guy who had metastatic colon cancer four, and he had been on hospice for two years, was not getting any treatment. But they said... he said, Sorry, they sent it back to me. And they said, I mean, he's not, he's not declining, he's kind of looking longer. And so, you know, I mean, who knows? Who knows? I always say, I'm not in charge, right?

 

Dr. Regina Koepp  25:38

Yeah. There are bigger powers at play.

 

Dr. Lauren Marcewicz  25:40

That's right, exactly.

 

Does a person have to have a DNR to be eligible for hospice?

 

Dr. Regina Koepp  25:43

Um, now, there is some question about does a person have to be DNR to be eligible for hospice? Or can they stay full code?

 

Dr. Lauren Marcewicz  25:53

They can stay full code. So agreeing to a natural death or agreeing to not be resuscitated is not a strict requirement for being part of hospice. And people have different... I mean, you know, I think sometimes people, we talk about this a lot in palliative care. So, sometimes people with a lot of resuscitations on E, where people get CPR, and then kind of, you know, come back to full function and full life. And so there's, I think, there can be a lot of misunderstanding about what actually happens in CPR. And so, you know, we might, we might live more with the Hollywood reality than sort of being able to see what it's really like. I also think sometimes people are like, gosh, why wouldn't I want that last chance? Or maybe I need my family to see that people are doing everything for me or whatever. There's lots of reasons why people might elect to, not allow natural death. Lots of reasons why people might say, No, I want the paramedics to come in and do CPR. I think sometimes what happens is, you know, if somebody... sometimes I'll ask people, do you envision dying at home surrounded by, you know, sort of your stuff and people that you love, and if so, then you know, maybe Hospice is for you. On the other hand, if you really do envision dying in the hospital ICU with somebody, you know, doing CPR on you, and that's what you envision, then maybe hospice isn't for you, because Hospice is something that's designed to keep people out of the hospital. And so if you're going back into the hospital, you know, for any attempts to change things, even if those things can't be changed, then, you know, then... but your doctors might decide that Hospice is probably not the best thing for you. It just depends on what people envision and what their goals are. We talk about that a lot.

 

What do families tend to struggle with the most when it comes to end of life care?

 

Dr. Regina Koepp  28:13

Yeah. What do you notice families tend to struggle with the most when it comes to end of life care?

 

Dr. Lauren Marcewicz  28:22

Yeah, I mean, I think it's probably a minor thing, but I think the thing that people struggle the most with is feeding and food and eating, you know, so the, the natural pathway for all of us is going to, I mean, unless we have something catastrophic happen, you know, the natural pathway for diseases to take over our bodies is that we, we just don't have a desire to eat. Like when you have the flu, you're not thinking like what's the next thing to eat because you just look crappy the entire time. That's easy, right? So that's, that's essentially what happens when people have lung disease or heart disease or cancer is that they don't, at some point, they don't want to take in food and then it doesn't matter what they take in, they're still going to lose weight and kind of have an... and not get enough nutrition and that's just because they're sick. But for all of us food is how we show people that we love them. Food is how we care for people when we have parties, we put food on the table. We have guests over, we put food on the table. We all get together for Thanksgiving and for Christmas dinner and Easter dinner and, and Passover and you know so all of those ways that we use food to show people that we love each other people want to do that at end of life, right? Like that's, that's what people... why isn't he eating I make him his favorite foods and he doesn't want to eat it. And so that, I mean, that can be a real struggle, right? When you want to do something for somebody to show that you love them. And so you make their favorite food, and that they've loved for 30, 50 years, and then they don't eat it anymore. That's, that's really hard to take, like, cooking or like what, you know, what is it? And so I think people, I think people struggle a lot with that. And I guess I would just say, it's, it's natural, it's natural for people to... I once heard somebody say, you know, as people are dying, they become less interested in the things of this world, and more interested in the next world. And so all of that is based on what you think about is coming afterward. Right? But, you know, that made a lot of sense to me, the person said, Look, people don't talk as much, they're sleeping more, and then they're not eating. And, and all of that is because whatever work is happening in their body, it's about the next place, they're going to, it's not about trying to keep people here. And that's true. You know, when we sleep, when we eat, it's about us trying to stay here, trying to participate in this stuff that's here. So...

 

What does the dying person struggle with the most when it comes to end of life care?

Dr. Regina Koepp  31:17

What do you notice people who are dying tend to struggle with the most?

 

Dr. Lauren Marcewicz  31:22

Um, I think, you know, I'll say people who are actively dying, I think, I don't know what they struggle with. Because I don't know, I don't know what's happening in there most of the time. So we try to treat the symptoms that we think we're seeing and, and hopefully, they're not struggling with any of that stuff. But I think people who are kind of like, before you get to an actively dying place, I think people struggle a lot with doing what feels right to their, to their family. I just took care of a gentleman who, you know, whose family was basically like, they had asked... he had very advanced cancer, and his family said, you know, can we get a second opinion? And I said, Well, sure, you can do that. And I said, I'm gonna recommend to you that, you know, the reality is probably that there's not going to be a second opinion available for him just because of how sick he is. But yes, if you want to do that, that's fine. And I sort of gave them some, some options and talked with them about what that might look like. And so they said, you know, at the end of the meeting, they sort of looked at him and they said, Well, we we want to do whatever you want to do, you know, we don't really want you to be an experiment of any sort. But we want you to do what you want to do. And he heard this part and was like, I can't, I can't handle the sadness that, you know, the tears that are coming from my mom and the tears that are coming from my son, I want to live and we're going to, you know, get a second opinion. And then privately, he would say he just wanted to go home with hospice. And his family, they came up to me after the meeting, they were like, I think he just doesn't get it. I think he just doesn't see. And I said, You know, I think really, he's trying to protect you, and you're trying to protect him. And that's what you both are doing. And while you're trying to be honest with each other. That's kind of what's happening here. So, I think that's, that's the struggle that I see a lot of times is that people want to do what their loved one... everybody's trying to be different. Right? The person who's dying is trying to be different to their family, and the families trying to be different, and people end up not being. I mean, I think the other problem is that sort of in our culture, we talk around death a lot. We don't, you know, we don't say the word we don't talk about, what are your dying plans? So we talk around it a lot. And I think that happens for families who are confronting it as well, there's a lot of talking around it. You know, like, the whole question, what do you want to do? What do you mean, what do you want to do? There is no what you want to do, you're dying. And I think people are probably not as honest with with each other and with themselves as they could be. And that leads to people struggling with, with sort of what next steps to take and where do we go from here?

 

Dr. Regina Koepp  34:35

Yeah, I think in the in the mindset of it being a gift, but then it creates a struggle. As you were talking about that in my experience in hospice and working with families that end of life is the gift of the magic story... where there's a couple and the female member of the relationship has long beautiful hair. And the male member of the relationship has his grandfather's watch or something special, but the battery on the watch is dead. And, and he's lamenting the loss of this watch because it's not working because the battery's dead, or some piece is missing. And she says, Okay, well, there's an important... maybe it's Christmas, I don't remember. And I'm gonna cut my hair and sell it to get this piece for the watch. And then he says, Well, I love her so much. And I love her beautiful long hair, that I am gonna sell my watch to buy a beautiful clip for her hair. So then it comes time like to see each other for Christmas, or whatever it is. And they present their gifts, and she has no more hair, she has no hair for the clip. And he has no watch for the, for the battery. And all they have is their love for each other. Right. And they're, they're demonstrating their love in these really profound ways. But then they're missing this key ingredient, which is like the importance of the connection and the time together. And that so often when I hear these stories, like you're describing from your work in palliative care, where the person who's dying may have the wish, just simply to die in peace, surrounded by his family, without a lot of medical drama happening around him. And families like, well, we want our loved one to have this life and we want to keep them like go and do a last wish trip or something and keep them going and help them see their grandchildren and, like and so how do we do that? And they're both having their own narratives. And so they're essentially cutting their hair and selling their watch. And then they never get the conversation that's like the healthy end of life conversation of how can we do this as a family peacefully, honestly, how do we talk about these things? And because all that's left really is their love for each other, they're not gonna have, of course, the hair is gonna be gone, and the watch will be gone. And all they have is each other. And so how do you like, maximize that? Right, and these conversations?

 

Dr. Lauren Marcewicz  37:19

I don't know. I mean, that's, that's a great, that's great. I mean, I think the idea that people have different narratives of, of, like, what's happening, and what they're doing is totally spot on. And I see that, you know, all the time, and sometimes it's okay, and it works out. And then sometimes people are just, you know, totally at odds, like think about all of the dysfunctional ways that we love each other. You know, when everything's okay. There's lots of, you know, somebody's nagging too much this or somebody, you know, whatever, right, like, all of the ways that we are not perfect. And then that stuff comes out, you know, 100 fold, when there's a crisis. And so, yeah, you just... we're not used to being honest about our emotions with people. Not even the people that are really close to us, you know, we're not used to having... I'm not used to having really frank conversations with each other and certainly not with, you know, who has frank conversations with their kids, right, like we try to avoid those things. So it just... yeah, you can have a lifetime of like, having made it through a lifetime of small dysfunctions or whatever, right, that we all have. And then it comes time for this huge monumentous thing, this huge piece of crisis for everybody. And, I mean, sometimes people just can't navigate that. But you're right, then are left with sort of this connection with each other. Hopefully, or...

 

Dr. Regina Koepp  39:05

Yeah, yeah... all sorts of variability in between. Yeah, we are complex creatures, I guess. And, you know, the other piece is that I'm working with families with severe and terminal or chronic and terminal illness. You know, the quality of our relationship before the illness strikes kind of influences how our relationship and the journey will go after terminal illness is identified. And so it can, it could go in so many directions. And so it's, I think the end of life journey starts at birth, because you're, we're relying on... but we have to rely on our relationships, to get us through life and then get us through the dying process. And however that attachment goes through life, kind of influences our experience at the end of life. But... Yeah, I digress. Um, oh, can you talk about... let me not be so chipper when I say this. Hold on one second. Can you describe the active dying process? You mentioned active dying.

 

What does it mean for someone to be "actively dying"

Dr. Lauren Marcewicz  40:19

Yeah. So when people are actively dying, they kind of, you know, I made the mistake of sort of describing this once to somebody as almost like falling asleep. And he didn't want to go to sleep, you know, for four months after that. But the final sort of common pathway for death, when somebody has a chronic illness is that organs start to shut down. And as organs start to shut down, whether that's your heart or your lungs, you know, one of the major... two of the major organs that start to shut down are your kidneys. And those kidneys are super sensitive to kind of everything that's happening in the rest of the body. And so, kidneys shutting down, and liver shutting down, those are the things that filter toxins from our body. Once those start to shut down, toxins start to accumulate. And as toxins start to accumulate, we get more confused. And so there might be a period of confusion where people are actually kind of a little bit, a little bit confused. And I think that can be scary for loved ones. And I think it's actually scary for patients a lot of times as well. After that, as that confusion I think gets worse people or sometimes people don't even go through a period of extreme sort of awake confusion. But as people go through that they get to a space where whatever's happening mentally, we can't, we can't really see what that is. So they look like for all intents and purposes, like they're in a coma, I guess would be the best way to say that, you know, really hard to arouse, not participating in conversation, you might be able to get like a moan if you ask something specific to the person, but just really not able to tell us kind of what's going on with them. People, sometimes you'll see people who might have some different... sort of struggling to breathe. And so we always look at sort of whether the nostrils are flaring, or whether people look like their brow is furrowed or whatnot, those are signs that people might be uncomfortable. More often than not, people are pretty, you know, pretty calm in the later sort of stages of that. And so I would say that that's anywhere from, you know, hours to, you know, 12 hours to three days before somebody actually kind of... kind of dies. I think as the dying process goes on, people, can't swallow. So you get the pooling of secretions sort of in the back of the throat. And, you know, I think people commonly refer to that as the death rattle or hear that and so you, I mean, you can certainly hear, you know, gurgling in the back of the throat. We don't think that's painful for people. We don't think it's distressing. We don't see people with sort of furrowed brows kind of trying to do something about this gurgling. I think it bothers families a lot. It's really... it can be really loud. And it can be really sort of distressing to hear your loved one going through that. And then the cardinal sign of, of the thing that I always look for when I'm trying to figure out sort of what the trajectory is for somebody, how far away from death do we think this person is when people stop urinating so less than 100 CCS or 100 ml of urine in a 12 hour period suggests that the next that death is going to come within the next 12 hours? So people are pretty out of it. I don't think I've ever seen anybody be alert you know, and some people can't have a conversation and I think maybe sometimes people want something like that to happen but people you know, wouldn't be able to say goodbye I love you and you can have the black car or you have my... you know, those things kind of can't happen during an active dying process.

 

Dr. Regina Koepp  44:50

And the majority of people have an active dying process that they die from illness.

 

Dr. Lauren Marcewicz  44:54

Yeah, right from natural causes or illness. And sometimes, I mean, I would say sometimes that can be... that whole process can be fast or slow, depending on what's going on. So if it's an infection, for instance, that is causing this, this shutdown of organs, that can be pretty rapid, I mean, we can be talking a matter of several hours, and that whole process kind of gets sped up. If it's the heart failing, you know, it could be anywhere from hours to days if it's maybe something more like the liver having shut down from sort of long standing liver disease that might be a little bit longer. So it just, it just sort of depends on sort of where people were at before they started the dying process, and kind of how bad whatever the final insult really is to their body.

 

What tips would you give to families who are starting that end of life process?

 

Dr. Regina Koepp  45:59

Yeah. What tips would you give to families who are starting that end of life process?

 

Dr. Lauren Marcewicz  46:04

I think, so I'll say a couple of things. I think, first, knowing that dying is a process. And it's not. You know, I don't think that dying is a moment even... we talked about kind of like time of death. And it's this one specific moment in time. And I don't, I don't really think that that's how that happens. I don't think that we can tell that. But I think the shutdown of the body happens over time. And it's happening. You know, I joked that we're all dying, right? But we are... like our shutdown is slowly, slowly happening over the course of time. And so when you know that you have a diagnosis, you're going to die in different ways, right? You might die to the person that you were, or you might die socially, you can no longer bowl, or you might die socially, because you can't be a doctor anymore, or what. And so there's all of these different, different processes that  happen at throughout the dyeing process. And so just sort of knowing that it's a process, it's not going to be a moment. I think, helpful and important. I think the other tip that I would give people is, you know, really make space for honesty, and I don't... I hope that doesn't land in like a, What is she talking about kind of way, I really think we all have different expectations for each other all the time, especially in a marriage, you know, or in a patient or parent child relationship, or in sibling relationships, we have all these expectations based on what society tells us and what we have experienced from each other before. And thinking about, at least thinking about making space for, you know, what would it look like if we were honest about what we needed from each other? If we were honest about what we wanted, if we were not, not sort of hung up on all the expectations that we have for each other and focused on being honest, what might that look like? What might that bring? I think those are a couple of tips that I would have. And then the third thing I'd say is just I mean, some people feel like they can trust their doctors. And so if you have a relationship with a doctor where you feel that that's the case, you know, talk to your doctor about about all of the concerns, and all of this stuff that you're worried about, I think doctors a lot of times are pigeon holed into like, we're going to talk about blood pressure. Today we're going to talk about your diabetes or whatever sort of the kind of key points and sometimes you can go to a, you can have heart failure for two years and go to the doctor for two years and be getting worse all the time. But never have had a conversation about end of life. Never have had a conversation about what that might look like, what options might be, you know, because each time you're just sort of going through the checklist of what might need to be talked about. And so if you have a doctor that you trust, I would talk about function and talk about the things that concern you about about end of life and what are we dealing with? And what's this going to look like and how do I get help and sort of all of that because the more planning that you can do up front when you're healthy and we can do the running around that you need to do and getting things in order and all of that and thinking about your wishes. The earlier you can do that the better. This isn't, this isn't stuff like a one day, I'm going to decide, oh, that's how I want to die, or Oh, that's how I'm going to think about CPR, right? Those things require a lot of thoughts. And so just giving the time and the space for that, I think from the outset is good.

 

The Importance of Anticipatory Grief

Dr. Regina Koepp  50:21

To allow some grace for the emotional preparation for all of that. You're talking about this process of anticipatory grief and ambiguous loss of losing bits and pieces of yourself or of your loved one over time. And that ambiguous loss where the person is still there, but they're different, or not the same. And then this anticipatory grief, I'm preparing for the end emotionally and saying goodbye, and bits and pieces over time, that if caregivers and us if we're active if we're in the dying process, if we take the time to do that, to grieve in an anticipatory way or to experience the loss, even when it's ambiguous, like it's sort of gone. But it's still here, when it's not clear, and if we allow ourselves the sort of space and grace to do that, and actually help with the aftermath of when the person does die, and is no longer physically here. And that what we know about caregivers who engage in anticipatory loss process, or anticipatory grief process, if they do it in a healthy way, they have a healthier outcome with grieving down the road. And so that's actually, I think, an important part of the process for our human psyche and spirit is, even though difficult to engage in the process of grieving even before the person is gone.

 

Dr. Lauren Marcewicz  51:48

Yeah, I mean, I think, you know, we're, there's, like, we're gonna be here, you know, for a certain period of time, like no matter what, that's often what I tell people like, yeah, you can't be the person that you were, you just, you can't because of memory loss, or because of functional loss or whatever. But you're still here. And so what the trick is, is to now figure out how do you be you with all of this newness? Right? How do you still... because you're still you, but how do you make that new you fit into the body that you have? Or the stuff that's going on? For you?

 

Dr. Regina Koepp  52:26

Yeah, and then it becomes a real family thing, because the person might still see, yes, I'm myself, but the family then might be responding to the person, no, you're sick, we need to step in. And so then the whole system needs to adjust, and right to look at where the person is capable, and where the person can be upheld and honored, sort of valued, where they can contribute. Is there anything else you would like to share with people who are embarking on this end of life journey, anything that stands out to you?

 

Final Words of Wisdom

Dr. Lauren Marcewicz  53:02

I mean, I just, you know, we're all gonna go through it. And, I think... So, obviously, I have the opportunity to think a lot about all of this, because I do it every day, but it is a gift. I know. Gosh, I hope that doesn't sound glib, but it is a gift to know that dying is coming. I mean, if you consider you know, like, I had a friend whose dad died in a car accident, and the trauma from that, right, the trauma from an unexpected death is deep, and we get through it for sure. But like to think about what a blessing it is to know, to know that you can spend time with the people that you love, you know, can arrange for meaningful time with the people that you love, or you can, you know, say goodbye, the possessions that you have that you really love, or see this one place one more time, whatever those things are. That is a real gift. And it's a gift if we use it in that way, right? If we don't look at it as something that we need to fight and battle and argue about. And you know, and something that we need to ward off at all costs, but rather is a gift that is bestowed on us for the opportunity to use it appropriately, then I think, I don't know, maybe it'll go a little bit easier for all of us. I would like to think it's going to be scary. It's going to be scary no matter what. But having somebody who sort of, you know, back to my dog, having somebody who non judgmental is just like, yep, I'm here with you looking at that same expanse. I think... I don't know, maybe that's a good thing.

 

Dr. Regina Koepp  55:02

I really appreciate your time and contribution to the show and then all the work that you do with our nation's veterans and with being with people at the end of their lives and, and with families at the end of their loved one's life. So, I really applaud you for the work that you do and appreciate the care that you give. So, thanks. Thanks for that and for being on our show today.

 

Dr. Lauren Marcewicz  55:27

Thank you so much for having me. It was it was great to have the opportunity to have this chat.

 

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Dr. Regina Koepp  55:33

That's all for today. Now it's your turn. Join the movement to include older adults in conversations about mental health and wellness. It's simple. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation, too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.



 

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