Traci Manis, BSN, RN (Host): I'm Traci Manis, and I'm here for another empowering conversation with Dr. Maureen Dudgeon with NKC Health Medical Oncology and Hematology. Dr. Dudgeon, thank you for being here today. I'm so glad that we have this opportunity to talk.

Maureen Dudgeon, MD: So am I, Traci. You know, when I meet patients, what I always say to them is, "My name is Maureen Dudgeon, and I'm a doctor. I'm only telling you that so you know I have a license to do what we're about to do, but I'd really rather you call me Maureen."

Host: I love that. That connection and that personal touch has to mean so much to your patients. That's really meaningful.

Maureen Dudgeon, MD: You know, I twice as much back as everything I give.

Host: I love it. I love it. Okay. So, we're talking about palliative care today. When patients hear the word palliative care, what do you think that usually means to them?

Maureen Dudgeon, MD: Well, I think all too often they're just immediately zeroing in on the fact that it's really hospice, and we're trying to fool them by calling it something else.

Host: Why do you think the the misconception persists?

Maureen Dudgeon, MD: Well, you know, I think hospice has such a bad name, but that's a talk for another day. But I think it really persists because people go right to the internet and Google palliative care, and then they see hospice mentioned, and they don't see the rest of it. They just see the hospice part. And then, they're frightened.

Host: So, let's talk about palliative care. I have learned a lot about it this week, and I equate it to, like, a square is always a rectangle, but a rectangle is not always a square, right? So, hospice is always palliative care, but palliative care is not always hospice. It's not always end-of-life care. So, explain that a little bit.

Maureen Dudgeon, MD: Yeah, I think that's really important to understand. I always kind of say there's palliative care, and part of it's hospice, but there's a whole lot of other treatment and approach that's just palliative care. And hospice is for end-of-life care, but palliative care is about making things better and easier for anybody with a challenging or chronic disease.

Host: Give us some examples. What might be some of the reasons that someone would need palliative care?

Maureen Dudgeon, MD: Well, palliative care can be used for anybody with a chronic, life-threatening illness or a chronic painful illness or an illness that's going to get better but has a really hard time in the middle. And people, I think, right away think about symptom management, like pain or nausea or this or that.

But to me, I think it's more important for someone who has this scary thing going on, even if it's going to be limited, this scary thing going on, to wonder if what they're feeling is okay, to think that my feelings are wrong or scared or I'm a wuss or I'm this or that. And I think it's really important to sit down and talk with somebody who'll say, "Whatever you think is okay. Tell me about it, and let's work it through."

Host: Yeah, the fear really rides in the, the not knowing, right? The more they can know, the more that can alleviate those fears would be my guess.

Maureen Dudgeon, MD: I think that's exactly right, and I think people are so competitive. They want to be better at this chronic illness than anybody else, you know? And so, to know that whatever they're thinking is okay.

Host: At what point in someone's illness should they start working with a palliative care doctor?

Maureen Dudgeon, MD: Well, I think as soon as possible, because there are so many questions, as we were just talking about, that people have or concerns or fears that maybe they're afraid to share with their oncologist or their rheumatologist or their heart doctor or whatever, or feel like they're wasting their time or, you know, or they ought to know the answer to this.

There's so many questions to just be able to sit down with somebody. And all the time, I'm not going away. We'll stay here till you're finished. What are your concerns, and what are your worries? And so, the sooner you get those answered, the less time people have to stress and fret that they're doing it wrong.

Host: So, things like pain management, symptom management and those, explain to me a little bit more about what happens during palliative care.

Maureen Dudgeon, MD: Well, we do a lot of talking about the concerns we just talked about. But with palliative medicine too, I've had a lot of experience with using pain medicines, with treating side effects from pain medicines, like constipation, which is the most common one, or people get sick to their stomach, or they can't sleep, or they're depressed.

So, we can sit down and talk about the various medications that I have a lot of experience with. And then, I have my colleagues who are really good at talking with people about behavioral ways just to address their stress or fear, depression, and not always having to go straight to medicine.

Host: And some of those things can come along just with the diagnosis of something, right?

Maureen Dudgeon, MD: Oh, yes.

Host: You can have a diagnosis that might lead to depression. And so, treating some of those things along with that care can be really helpful as well.

Maureen Dudgeon, MD: Yes, absolutely.

Host: What are some of the moments when palliative care can make the biggest difference for patients and families?

Maureen Dudgeon, MD: Well, I think anything—and again, I just want to go back to talking about these self-limited illnesses. You know, someone who's going through, you know, for instance, a bone marrow transplant, they're going to get well. This is not all about, you know, things that are going to be end of life sorts of things. The having their questions answered really help a lot as well. But I think, being able to, again, have a patient and their family sit in the same room and let me walk them through sharing what they're afraid of or what they're not saying to each other.

Host: Oh, yeah.

Maureen Dudgeon, MD: You know, what are you worried about? What are you afraid of? Do you really know what he or she wants? And, you know, what are you scared of?

Host: But there's a lot of dynamics within families, too, where I don't want to say something that's going to let you know that I'm concerned or that I'm afraid. And so, I don't want to add to your stress, so I'm going to just hold onto my own. But that expression of all of those feelings and just being open with one another can alleviate some fear as well and help probably in the healing process.

Maureen Dudgeon, MD: I've been doing this for 50 years. And so, I have so many times when I would be in a room with a patient in a hospital, this wouldn't be a palliative care situation, for instance, and there's an older mom, and there are the kids. And kids are in the hall saying, "Don't tell her she's going to die." And, you know, first of all, it's not their choice, but I don't think you have to shove people's, you know, face in that kind of thing. And I would often just go in and say, "So, hey, Gladys, what do you think's happening?" And invariably, the patient would say, "Well, I'm dying, Doctor." And so, that really opens it up.

Host: Have there been any moments in your career that have made an impact on you as a provider?

Maureen Dudgeon, MD: You know, I tell this story all the time, and I can remember this guy's name, but I wouldn't use it here. And this was a long time ago. I was a fairly new clinician and had small kids at home and, you know, really trying to do right by people. And I had this fella, I was working in the metropolitan Kansas City area, and he lived south a bit. And his neighbor always brought him up, and I was so fond of him. And he was hospitalized again and again. And the last time he came in, I sat down by his bed, and I said, "I can't fix you this time."

And then, I started crying, of course. And he just patted me on the head and said, "Honey, I've had a wonderful life. Thank you so much." And I think that really was an example of me learning to be me and be human with people, help them and help me.

Host: Yeah. Just in the short time that I've known you, I would love for you to be with me in those moments. You're such a warm human being, and it's beautiful that you can have those connections with patients and that they trust you. And I think that's huge. Part of what you bring to patients is time. Why is that so important in serious illness care?

Maureen Dudgeon, MD: Well, you know, you always hear the jokes about the doctor who he has his hand on the door the whole time, you know? But it's been for years. I would always say to patients, "I'm sitting here till you're done, okay? Or we'll make another plan for that." And then, they can kind of relax and don't feel like they have to, you know, get everything out there. I'm so fortunate at this stage of my career to have joined NKC Health and be in a place where the time that I take is appreciated and supported and allowed and not rushed like other circumstances.

Host: Yeah. And sometimes those conversations flow naturally just from the time that you're together and the relaxing and the getting to know one another. I think that's important as well. So as far as time in life, how are patients afforded that as they work with you?

Maureen Dudgeon, MD: I know we focus on quality a lot, and then on how much the cost, the emotional or physical cost of treatment, is it worth the time that you get, and how to balance those things, and know that either way is the right answer. And then, also to take away a lot of this fear and anxiety so that patients don't constantly worry about that. And also, worry about they're going to tell each other the truth. You know, like we talked about earlier, it just gets out there and then they don't have to fret about, "Oh my God, I'm going to accidentally tell mom," you know?

Host: Right. Or mom might feel pressure to say, "I don't want to do this, this care that's going to prolong my life. I'm ready to go." And the child might feel a very, very different way.

Maureen Dudgeon, MD: That's true, and that's a big, big conversation to have and a big kind of mediation in many ways, keeping in mind that it's the patient's choice. But if it's, especially mom, well, moms and dads will do about anything for their kids. So, sometimes you can mediate a way that the mom's going to do a little more. "This is for you, not for me."

Host: Let's talk a little bit about advance directives and goals of care conversations that you might have with families.

Maureen Dudgeon, MD: This is a particular crusade of mine, because I've seen way too often when people haven't made their wishes known, and it's heartbreaking. I 's heartbreaking enough to have someone you, you can't save, but to have the family have no idea what to do. So if I had my way, all around this city, NKC Health would have giant billboards that say, "Who speaks for you if you can't speak for yourself? If you don't know, we'll be glad to help you figure that out." Because every person 18 years of age or older should have an advance directive. An advance directive generally means a written form, but the most important part is making your wishes known.

An advance directive does a couple of things. It allows you to name a person who would speak for you if you can't speak for yourself, and then to outline what your wishes are, what you would want in terms of a critical illness or a terminal illness. And the paper isn't nearly as important as the conversation, because I'm fond of saying the very cruelest thing you can do is for me to say, "You speak for me," and then never tell you what I want. Because when the time comes, then it's a burden, not a privilege.

Host: And I also think that sometimes those conversations are so uncomfortable because people don't want to talk about death, and they don't want to talk about dying, even though it's a part of everyone's life. How would you suggest that a parent or a child start that conversation with each other, or a spouse, or a friend?

Maureen Dudgeon, MD: You're right, it can be very difficult. I mean, for one thing, there are cultural norms that you must not. I mean, there are some cultures that if you speak death, then you are causing death. So, it's extremely important when we talk with people that we kind of figure some of that thing out.

And one of the things I've learned over time is if you're looking somebody in the eye and you say the wrong thing, you're going to know it. And then, you can say, "Oh my goodness, I said the wrong thing. Tell me what it is so I can fix it and I don't do it again." And then, that way, I learn and I can back up from what I said that was wrong.

But it has to be that, you know, one of the things organ donation, I think, really helps with these youngsters because the idea that they would want to know that, you know, something bad happened to them, that their organs would move forward, assuming it's okay in the culture. But again, I think the best thing to say and my phrase is always, "Who speaks for you if you don't speak for yourself?"

Host: I want to go back to the conversations, right? When you see in someone's eyes that they're uncomfortable with what you've said and then asking them, "Why does this make you uncomfortable? What's uncomfortable about what I said?" And lean into what's uncomfortable about it because, but it is life. And I think that that then gives us a deeper connection with one another and a better understanding that can lead to some really great conversations about difficult topics.

Maureen Dudgeon, MD: Absolutely. Because, I mean, even if you take the same people who are in the same culture, in the same generation, in the same religion, in the same everything, they're going to have different ideas.

And so if you just plow in assuming that people are all alike, then you're going to get yourself in trouble. And someday I'm going to write a book about the messes I've stepped in over time. But I've seen in the eyes that I said something wrong. And boy, oh, boy, if you say, "My goodness, I just said something wrong. I hurt your feelings. I offended you. Please tell me what I said so I can repair that with you, and so I learn to not do it again," it works.

Host: Yeah. And it builds trust.

Maureen Dudgeon, MD: Yes.

Host: And you get a lot farther that way. How does one get an advance directive? Who do you call? Where do you go?

Maureen Dudgeon, MD: Well, it's really, really easy if you know where to look. You can go on the Google that we were mad at before for misrepresenting palliative care, and you can write your state, Kansas or Missouri, Advance Directive Form. Right there, print it. Okay? And in Kansas, you complete it, and then you go across the street to your neighbors. I did mine on the front hood of a Porsche for my neighbors when I was living in California. Not my Porsche. And they witnessed my signature. Now, when somebody witnesses your signature, they're not reading your document. It's none of their business. But they're saying, "That's Maureen, and I saw her do that." Yeah. "I saw her sign that." Missouri is a little more challenging because that particular thing has to be notarized, but that's easy enough. Fill it out, find a notary, you know? People do have them done by lawyers. You can have them done by lawyers. You don't need to. You don't need to at all. The forms are perfectly legitimate without a lawyer. My son's a lawyer. I'm fine with lawyers. You don't need one for this.

Host: Okay. Very good to know. The scene you just described of you signing your advance directive on the hood of a Porsche really takes away the weight of seriousness of something like that. It doesn't have to be so scary and so ominous.

Maureen Dudgeon, MD: Right.

Host: Right. It can be, "I'm just signing. This is what I want done for me." It's not that I'm expecting to die tomorrow, but I want to make sure I make it easier on everybody else. When it's time, I want it done the way I want it done.

Maureen Dudgeon, MD: Exactly. It's so important. I recently had a pretty serious procedure here at NKC Health, and being me, I kind of like control beyond the grave. So, I mean, I wrote out everything. You know? I would like my sheets changed twice. That sort of thing. But on the other hand, I was very clear about what I wanted and what I didn't want. But in the end, you can't plan everything. So, you have to describe, and a phrase I use a lot of time, I need you to describe in these documents what's a life worth living for me. And to say, "I would like the doctors and the healthcare team to do what's necessary to restore for me a life worth living. And if that can't be done, then make me comfortable."

Host: That's beautiful. I love that. We talk a lot at NKC Health about empowerment. And I can't think of anything more empowering than to have your end-of-life care decided by—

Maureen Dudgeon, MD: You.

Host: By me. My end-of-life care decided by me. And the way you phrase that is beautiful. What's a life worth living? And it's up to me. And I hope that our community embraces that empowerment and moves to have their advance directives done as well.

Maureen Dudgeon, MD: You know, people spend a huge amount of time picking out the hymns for their funeral, you know? Now, my funeral wish is this: I want one of my girlfriends to stand at the door. If anybody comes to my funeral I didn't like, she's to say, "Get out of here, she couldn't stand you." But that's my whole funeral plan. But it's much more important to talk about how you want your end managed and how you can make your family comfortable than it is with him, in my view.

Host: Yeah, I love that. Perfect. Okay, palliative care has grown a lot in medical specialty over the past few decades. Why do you think healthcare systems are investing more into palliative care?

Maureen Dudgeon, MD: Well, for one thing, it's the right thing to do, because it is very helpful to people. I think one of the downsides of it for hospitals, and it's an investment because it doesn't really pay very well, you know, in terms by insurers and Medicare for instance. So, the hospitals are really kind of giving this as a gift to their patients and their employees so that you can do this work. It just doesn't pay well. Fortunately, again, the gift I have from NKC Health of being able to do this and do it right is tremendous for me.

Host: Yeah. So, 22% of our community is over 65 years old. So palliative care, whether it's end of life or not, is important. And it's not just important to me, and this is me speaking, it's not important just for that population, but it's important for the families of those people as they navigate these waters they haven't been in before, to help them through those times and to have that comfort from providers in the hospital who can help them when, you know, emotionally they maybe aren't ready and maybe they don't understand and that fear grows. Can you speak to that a little bit?

Maureen Dudgeon, MD: Yeah. I think I do. Right now, I do mostly clinic work, but I also do inpatient work. And I tell this story all the time, not in particular the stories of a 45-year-old man who was just fine yesterday and is brain dead today. And, you know, that no one knows what he wants and no one knows what to do about it.

And again, the spokesperson who's identified either legally or steps up or whatever, then bears this huge feeling that they're causing the person's life to end. And that's not what it's about at all. So, it's extremely important to talk about that. But to try to find out what that person wanted. And I also have had the great privilege of getting a master's degree in bioethics in the past, so I learned a lot about the issues.

And one of the big important issues that I try to tell people is that stopping a treatment is not ethically or morally or legally any different than never having started it in the first place. To help them understand that, to walk through any religious beliefs or false beliefs they might have, to help them bring in clergy who can help them understand that they aren't killing their family member. And All those sorts of things.

And then, another thing you can really do is if you can say, "Well, maybe, you know, Bob never mentioned this, but does Bob have an uncle in the hospital?" And he said, "Maybe don't ever do that to me," or "Did Bob have a friend and say, 'Do all that for me.'" Even if he never said it about me or wrote it down, then you can—I can't tell you how many times I've documented this decision is consistent with the way this man lived his life. And that's really what we try to look with, is consistency with the way people live their life, how they would die.

Host: So, a degree in bioethics, explain that to me. What drew you to that?

Maureen Dudgeon, MD: Well, just the very things that we've been talking about, those sorts of things that areright and wrong and where justice comes into things and where your own empowerment, because autonomy, the word meaning you are a being with right to do, as long as it doesn't harm anybody else, what you want, and to make the decisions of your own. There's a huge literature around that, and that's where I learned a lot about different religions and cultures and that sort of thing. So, it's very interesting.

Host: Yeah. The world is getting smaller and smaller, right? We're exposed to so many different cultures. It's necessary to be educated and have that compassion for people who are maybe not exactly like us.

Maureen Dudgeon, MD: Exactly. And, you know, right here in the town of North Kansas City with NKC Health, there are a huge number of patients from other countries and other cultures that we meet here that we need to be ready to know that they may not think like us or believe like us, and we can learn from them.

Host: If someone's listening today, and they're dealing with a serious illness or caring for someone who is, what would you want them to understand about palliative care?

Maureen Dudgeon, MD: That you can always try it. If you don't like it, you can quit. That's what I would say. That's what I would say, because there's help for everybody, and there are teams. You know, it's not just the doctor. In fact, I'm probably the least effective. There are social workers and chaplains and all sorts of people who step in. And then, we can bring in community resources, and the whole team we work with. And I think it's important to sit down and talk with somebody who knows what they're talking about your end of life.

I have lately run into two good friends, who are, one, a clergyman and one other doctor who said, "Oh, I'm a DNR. Do not resuscitate." Well, they're not a DNR, and they're all confused about what that means. And I think it's real important to talk about what those things mean before you write down, "Don't resuscitate me," and you're a 25-year-old guy, you know? Because that's not what you really mean. And as much as I work in palliative medicine and have worked extensively in hospice in the past, I always like to err on the side of life. Because as we said earlier, if you start something and it's not the right thing, you can stop it. But if you don't start anything, then the person's dead, and you can't fix that.

Host: Yeah. Okay. Dr. Dudgeon, thank you so much for being with us today and sharing all this information. It's been very educational and helpful for our community.

Maureen Dudgeon, MD: Well, remember, it's Maureen. Thank you for being here today.

Host: Oh, you're welcome. Yes. Okay. Thank you, Maureen.

Maureen Dudgeon, MD: And it's been a privilege. Thank you.

Host: You bet. Thank you for joining us today.