What is Palliative Care and When is it Right for You?

A referral to Palliative Care does not mean a physician has given up on a patient, nor is it the same as referring someone to hospice. In this episode of Inside Scope, host Dr. Daniel Haight and Dr. Marines Acevedo Rodriguez discuss palliative care, which can provide relief and improve quality of life for those living with a chronic condition as well as their families. Patients with serious chronic illnesses may be referred to Palliative Care when they experience more pain, loss of appetite, or sleep issues. Dr. Acevedo says Palliative Care can empower a patient in a situation they can’t control or help them prepare for what’s next.

Inside Scope - A Podcast from Lakeland Regional Health

Transcript

SPEAKER_01 0:00

A lot of times patients or families think like, oh, my doctor is asking for me to meet with palliative. That means that they don't have anything else to offer or that they're giving up on me. And that's not that's not the something always we can do.

SPEAKER_04 0:20

Today we're going to talk with an expert about how to live with a chronic condition. Something that could suddenly worsen, but may not. You may be living with a condition for many years, but if it's serious, palliative care is all about making sure you have relief and you have quality of life. And with us today is Dr. Acevedo. She's a board-certified geriatric medicine and palliative medicine physician with Lakeland Regional Health. And we want to welcome you to the inside scope. So, welcome again. And I appreciate your time with this because your profession really takes a lot of time and compassion to deal with folks that are dealing with chronic conditions. What are some of these common chronic conditions?

SPEAKER_01 1:07

Thank you for inviting me. But definitely we deal with patients that have serious illnesses, like it can go from heart disease, lung disease, dementia, cancer, neurological diseases as well.

SPEAKER_04 1:22

And I think if you think of your friends, your family, your neighbors, you know, if we lose someone, it was often something that they were living with for many years, uh many months, and and I think this is some of your focus. So you named some of the common ones. A person with, say they've had high blood pressure for many years, but now it's causing heart failure, or they've had liver damage and now it's causing cirrhosis.

SPEAKER_01 1:46

Exactly.

SPEAKER_04 1:47

And tell me more about so go through those conditions again.

SPEAKER_01 1:50

Uh yeah, so we can talk a little bit about heart failure, pulmonary fibrosis, um, COPD, um, cancer, dementia, and any other disease that is chronic or that is progressive. Um, because our goal is to, in conjunction with your care team, to work with them to better improve your quality of life and maintain that independence.

SPEAKER_04 2:15

You get you I think that's the best part about your job, I think, is that you get to do everything together. Tell me about that team. Now, who is the patient seeing at the time you're getting involved?

SPEAKER_01 2:24

Yeah. So when when our palliative team is getting involved, is either myself or is one of the nurse practitioner or the physician or one of our palliative nurses. And uh our main goal is to get to know you, get to know what your hopes are, get to know what your goals are.

SPEAKER_04 2:42

What's most important to you? Because you're not you're not just walking around with heart failure. You're a person with a family, a job, you have a family, you're maybe you're retired, but you have all this history. Yeah. And you're there to get to know them to say, uh, I'm gonna work with your heart doctor or your kidney doctor or your cancer doctor. Wow. So I think that puts it all together. You have a great team. So you said you had nurse practitioners, you have nurses. Is there a particular area of the hospital that that helps with palliative care?

SPEAKER_01 3:11

So there is a palliative unit where um sometimes patients uh go there and it's more relaxing and anywhere in the hospital, right? Absolutely. We go anywhere in the hospital.

SPEAKER_04 3:22

Yeah, because I I think chronic conditions, you know, folks live with them and they feel they're under control. But I think the first senses, and like when does the light bulb go on that palliative care would really help me and my family?

SPEAKER_01 3:35

Yeah, so any any disease process that is progressing, or you're having a lot more symptoms, even when you're active treatments that can be affecting your quality of life, those are the times that we probably should be involved to just to have discussions. Sometimes the best treatment that we have to offer is a conversation.

SPEAKER_04 3:56

Yes. Well, it gives a chance for someone to ask a question that they might not have asked all their other doctors, but to hear it a repeated in different words, I think that helps a lot. So if somebody has kidney failure, that's a serious condition. There are treatment options, but that's a palliative care area of expertise. Um there's a lot of decisions to make, and there may be chronic discomfort that comes along with it. Is that sort of what you focus on discomfort? What other common symptoms do you cover? Trevor Burrus, Jr.

SPEAKER_01 4:28

So in addition to pain, is that shortness of breath, is that nausea, is that anxiety, sleep issues, um, lack of appetite. Trevor Burrus, Jr.

SPEAKER_04 4:38

Yeah. So the things that go along, and I could see that those aren't those aren't focuses on the cure, but they are so focused on getting the person to feel better and the family to give a chance to feel better with that. It almost seems like if I was a patient or a family member, I would be asking my doctors, I would love to talk to a palliative care expert. Because palliative care, I could I could see my other doctors, they're dealing with helping the condition, curing the condition, but right now I also want relief. So how would you sum up palliative care?

SPEAKER_01 5:13

Yeah, so it's is the specialty that focuses on patients that are living with uh chronic illnesses because we know it can affect, like you mentioned, quality of life. It can affect not only them, but also the family and family dynamics. So we are there to provide that support, not only by symptom management, but providing a lot of education about the disease process, help patients plan for the future.

SPEAKER_04 5:36

So with the patient's permission, the families involved, so they have a better understanding what they're going through because a lot of the care takes place at home or at work or the things they want to do.

SPEAKER_01 5:48

And I uh so is palliative care is trying to help uh raise the quality of life and bring relief to whatever symptoms correct, and bring back the focus of what is important to you, what is most important to you in your life so we can combine treatments that align with those goals.

SPEAKER_04 6:08

Okay, and we've talked in the past on different shows about what's most important to you. And I just love it when the physician and your specialty is asking the family and the patient, first, let's start, what's most important to you? And here you are on this journey through life and you have a condition. Um what what are some of the common things a person will say, this is what's most important to me?

SPEAKER_01 6:30

We sometimes hear that, you know, I have this event, my granddaughter is getting is getting married. I will really want to manage my symptoms so I can actually participate and be present during those in those events. So sometimes we can help with that.

SPEAKER_04 6:46

And so and so those what what matters most often gets tied with being mobile, having medications that aren't m interfering with what you want to do, but instead helping. So the palliative care, um, how does that even get started? So if you're admitted with a serious heart condition, they're doing everything they can to stabilize it, uh get you back home, or uh a lung condition, or a cancer condition. You're in the hospital with those. At what point does palliative care get involved? How does that even happen?

SPEAKER_01 7:18

Yeah, so sometimes we get called because there has been more symptom burden, you're having a lot of more symptoms, or the decisions that you have to make in terms of next steps in your care are a little bit more complex.

SPEAKER_04 7:30

Because it's not just involving the heart, it may involve other parts of the body. And I what I see palliative care is you're sort of combining it all together and helping helping the family and the patient uh know what questions to ask.

SPEAKER_02 7:42

Correct.

SPEAKER_04 7:43

Clearly communicate what's most important to them so that the heart and the kidney doctors and liver doctors, depending on what your condition is, are working together with palliative care to say, here's how we raise quality of life. So getting palliative care involved, it's usually a consult made by your main doctor in the hospital. Correct. So you get involved. What are some symptoms that are really common to say I need some help with this?

SPEAKER_01 8:07

So usually the main symptom is pain. But besides pain, there's also that shortness of breath. Having nausea or uh vomiting, having more uh debility because you have different medications that can be interacting with each other.

SPEAKER_04 8:21

Not being able to sleep, exactly. Shortness of breath and being anxious about that.

SPEAKER_01 8:25

So you have a combination of the appetite as well.

SPEAKER_04 8:28

Yeah, and then also the it's not just helping treat those symptoms, but it's also letting the family and the patient know what what symptoms to look out for. You know, shortness of breath mixed with a fever, shortness of breath uh mixed with certain chest discomforts. So that's good. And then to know you know how to get the most out of being at home or being at work. Correct.

SPEAKER_01 8:50

It's it's focusing on that on that part. Like I have this disease, but this disease doesn't define me. Is I can still have some quality of life, I can still try to do things that I enjoy by managing those symptoms and having clear expectations of of what is coming next. And prepare.

SPEAKER_04 9:07

Well, and some of these conditions are are things that can last for decades. And palliative care can also be involved in these long-term ones. I think it would be asking the question could this condition get suddenly worse? Even though I try to do everything right, everything correct, could it get worse? That answer, if yes, is perfect for palliative care.

SPEAKER_00 9:29

Absolutely.

SPEAKER_04 9:29

It's like don't be surprised. Ask the questions. And what are some of the things you wish that the family and the patient were asking? You the questions they should be asking, other than can I have a palliative care team member expert involved? What other questions would you want patients and families to ask who are in this kind of chronic disease that could suddenly become serious?

SPEAKER_01 9:51

Yeah. Um I I always like to empower patients to ask all the questions that they can think of. There's no small questions, right? Yes. The more information you have, the better decisions you can make in the future if something presents that you can um look at what what should I expect from this disease? What is the trajectory that I'm heading? If they're offering certain treatments, what is my how can how is this going to affect my quality of life? What are the risks and benefits?

SPEAKER_04 10:23

Yeah, so you know, prognosis. And then you have the other doctors working on treatments and cures that may have their own side effects that palliative care can also help with. But it's also you're encouraging them to ask, what's the expectations? What are the risks? What are the benefits? Yes. Let's touch on that, because we were going to talk about myths about palliative care. And my eyes light up when a patient sees the importance of palliative care and say, ah, this is right for me, and I'm going to really help so that when I go home, you know, that's going well. What are those things that we were talking about, the the sort of the myths about palliative care? Trevor Burrus, Jr.

SPEAKER_01 11:01

So uh a lot of times patients or families think like, oh, my doctor is asking for me to meet with palliative, that means that they don't have anything else to offer or that they're giving up on me. And that's not that's not the same. There's always something we can do. Something always we can do. And they're on the contrary, they're adding an additional layer of support for the patient, and if the patient wants for the family as well, because the patient is not the only one that is dealing with with the disease, right? It can affect the family, the caregivers. Um, so having that layer of support that helps them prepare for what can happen next is important because it gives you some power in sometimes situations that you don't have control of.

SPEAKER_04 11:44

Oh, exactly. And I and I think that that's what I would think matters most to people. They may not bring it up to say it, but it's maintaining independence. The thought of not being independent will lead to that anxiety, those worsening of symptoms.

SPEAKER_05 12:00

Yeah.

SPEAKER_04 12:00

And you're there to sort of help. Um with that, it's it's not it's not that you're coming with this alone. You're interacting with the other doctors, whether they're a liver doctor or heart doctor. Tell me about those interactions and and and why it's so beneficial that palliative care is involved early when a chronic condition is is becoming serious.

SPEAKER_01 12:22

Yeah, sometimes um we have one patient that is being seen by multiple providers.

SPEAKER_04 12:27

Which, by the way, must be very confusing sometimes for a patient who has multiple physicians. We want Exactly. You know, the the family really is the is the is the umes really advocating to say I want everyone on the same page.

SPEAKER_01 12:40

Yes.

SPEAKER_04 12:41

Each with their own expertise.

SPEAKER_01 12:43

So in and those type of cases is is very important for us to to be involved because we can put all the pieces together. Like um get the recommendations from every every different team members and then present that to the patient and the family and talking about like what is what would you want to do next? Like this is what has been offered, and giving them all the information that they need to make informed decisions about.

SPEAKER_04 13:08

Yeah, and I and I think what's also happening here is I have a hard time understanding something when it's only told to me one time.

SPEAKER_00 13:16

Correct.

SPEAKER_04 13:16

Even two times or three when it's three or four times, if it's the same consistent message, I'm now going to start understanding because I might have been worried or scared and not really listening because of that. So you're helping gladly repeat what they may have heard in the morning from the heart doctor and in the afternoon from the kidney doctor. And you can then get them to the point. Well, that you mentioned the the important question. What what are the risks of doing this? And what's the benefit? What if I don't do this? What to expect. What to expect and what can be done, and what are the risks and benefits of that?

SPEAKER_01 13:52

Exactly.

SPEAKER_04 13:52

That's huge for families.

SPEAKER_01 13:54

And that part also, some families, when they are presented with difficult decisions or situations, they want some support to make those decisions. So that is why we can be involved and have what we call a family meeting where we can sit down and go through everything that has been going on through your hospital stay. Talk about every recommendation from the different specialties, um, and then get them involved if if need be for them to have the that discussion and open a space for everyone to ask all their questions.

SPEAKER_04 14:27

Yeah, don't be afraid to ask. And it is it is sort of the reality. I think that that you help bring this out with a lot of compassion, a lot of time sitting with the patient. But it's also to say to the families is please think if if you do have a chronic serious condition, to ask about you know palliative care because it's all about having that quality of life, you know, being able to address the you know, address those those concerns and worries, because there is something that could be done that was beneficial. Um tell me a little bit about the team. How do how do they all sort of work together? We've mentioned the doctors from different fields, whatever that individual has, but you do sort of have that framework of who's the biggest helpers there, you know, in the hospital when somebody's really sick.

SPEAKER_01 15:12

No, definitely our palliative team. I've been very blessed. We have a very good and strong team. We have nurse practitioners, we have nurses that we go around the hospital seeing patients, and for us it's a privilege to be able to support patients and families during sometimes their more dys difficult periods of time. Um and we also have our palliative unit and all the nurses, PCAs and staff that is there, that it also helps provide.

SPEAKER_04 15:40

That's a very uh relaxing part of the hospital. I I think there the focus is is sort of that rejuvenation to try to get back to a quality of life that they had wanted. Sometimes you are dealing with the uh end of life and also the quality at that end of life, and where everybody's coming differently. The patient may have certain feelings, spouse may have a feeling, brothers, sisters, parents, children. Tell me a little bit about that, because that's a part where you you are as part of a palliative care, you may be involving other experts, say, in hospice. Tell me a little bit about the differences here because palliative care is not hospice.

SPEAKER_03 16:17

Correct. Yes, it is.

SPEAKER_04 16:20

So we want to say, well, but you also do work with the that aspect. Tell me about that.

SPEAKER_01 16:26

Yeah, that's usually one of the m most common questions, like is palliative the same as hospice? And the answer is no. Um palliative can be uh involved even when you're seeking active treatments, studies, when you're living with this disease. Hospice is more when we're we're switching a little bit the focus of our care to more directly to uh towards comfort and quality of life. Um so all hospice is palliative, but not all palliative is hospice.

SPEAKER_04 16:58

That's a good way of looking at it. And I because I think that is that sort of partnership of it's a harder discussion to have if you've not even thought about it. And then I even talk about the person who has heart failure or a serious lung condition, to to start thinking early on that palliative care would want to be involved early on because that's gonna help me navigate decisions to keep me as healthy as possible. Because I see palliative care as taking action. You you take actions to deal with these symptoms, and you you see the heart doctors doing what they can to keep the heart as strong as possible or the cancer as suppressed or treated or cured. But there's gonna be bumpy road. You're you're there, you're there for the bumpy road, right?

SPEAKER_01 17:43

Where there is a long journey and you don't have to go through that journey alone. You can have a team that can support you throughout that that trajectory and help you prepare um for things that could happen in the future.

SPEAKER_04 17:58

Aaron Ross Powell What about the the the the the emotional health, the behavioral health? Tell me a little bit about those interactions you have.

SPEAKER_01 18:05

Sometimes um when patients are dealing with this difficult con di illnesses, they just need a a conversation sometimes and and get get engaged and be heard, and sometimes that's the best treatment that we can we can provide.

SPEAKER_04 18:20

Absolutely. For them to be seen and and to be able to share those things because it's it's it's about mind, body, and soul, and then that brings our last issue is tell me about pastoral care. Is that palliative care? Um patients and families seek advice from all avenues friends, relatives, neighbors. Uh tell me about pastoral care. You are chaplains and things like that at like the regional.

SPEAKER_01 18:41

Our chaplains are a very good resource uh that is available, and we always encourage families, like if you if you want to talk to any of them, we can have them involved in in our family meetings as well. And sometimes families have told us, you know, I would like my pastor to be part of the of the family meeting. Can they be part?

SPEAKER_04 19:00

See, some of this is like I'm so worried about my kidneys, I'm so worried about my heart, and and I'm getting all this information. You're helping organize this to say, would you, would you not, or would you like to have your pastor involved or or a f special friend? We can you have your friend from Minnesota that we can beam in through a Zoom meeting and all that.

SPEAKER_01 19:22

It's it's like we were talking, serious illness doesn't affect only the body. It it it has a lot more than that. It can affect the that family dynamics, um your your quality, you can have symptoms. So we try to focus on all of those aspects. Very difficult. Exactly.

SPEAKER_04 19:39

And this could be over the next three years, five years, ten years. It could be something that's immediate. You know, with anybody that has a chronic, serious condition that could become very seriously suddenly, we often find it's hard to think about that. You don't want to think about that. And that means you don't want to plan about that. We're trying to change that conversation to be let my loved ones know what I think about that if I have this chronic serious condition. Tell me sort of s sort of describe this kind of situation.

SPEAKER_01 20:11

Yeah, because sometimes we're living we can live for many years with a serious illness, but things could change. Accidents can happen.

SPEAKER_04 20:19

Yeah, a car crash. Or and then you if you have a serious lung condition, it may impede your healing. Exactly. Or if you had a severe heart problem or kidney problem. Okay, and so it seems to me this this is a hard thing to discuss. How do how do you even get the word out to the community about don't wait till the unexpected happens?

SPEAKER_01 20:39

Yeah, and and it's important to have these conversations because we if we have those conversations early on, you have time to discuss with anyone that you trust to have these conversations.

SPEAKER_04 20:50

You can't okay, so I'm gonna just say, oh no, that's that's bad luck. That's bad luck. I'm uh what uh what are you gonna tell me? I mean, I'm I'm already sprinkling salt over my shoulder now. So but what do you say to that?

SPEAKER_01 21:01

So I say, you know, having these conversations are a good gift that you can give your family because sometimes you're not able to make those decisions, and it's your family the ones that have to make those decisions for you.

SPEAKER_04 21:13

And having a that's a that that to me says I have some control over the future by doing this now. Correct. Because if I don't talk about the what-ifs and what would I like if I was seriously ill or dying, I will have no control or input if I didn't say anything.

SPEAKER_02 21:34

Exactly.

SPEAKER_04 21:35

You know, I I think that helps me understand a little bit better why I would want to talk about this. And this is not just a palliative care topic. This is a topic with your primary care clinic doctor. Is he I uh what would be the steps? Because sometimes the primary care doctor asks, what do you call this? What would be the topic this is called advanced directive.

SPEAKER_01 21:55

Yeah, so it's it's called an advanced directive.

SPEAKER_04 21:57

Advanced directive. And you know, sometimes we we Get so used to that term, well, we know what that means. But no, uh advanced directive means I'm giving directions in advance. Exactly. You know, that sounds like that makes sense, but I I have a lot of folks that they don't think about it. And of course, they have not thought about that wording.

SPEAKER_02 22:16

Exactly.

SPEAKER_04 22:16

Advanced directives. I want to give my instructions now so that I take the burden off the family.

SPEAKER_02 22:24

Correct.

SPEAKER_04 22:25

And I am calling the shots even though I might not be awake or I might not be able to make a decision. Yes. So advanced directives.

SPEAKER_01 22:33

Yeah, it gives a guide to the family. It's a gift that we're giving to our family. So they know what our wishes are.

SPEAKER_04 22:39

So advanced directives, how does how do I do I need to hire an attorney? Do I need to buy some forms? What what you know because I see I can go on the internet and do these things. What what how what do you what's the way to do it?

SPEAKER_01 22:51

You can do it that way, but if you're in the hospital and our team is involved, we can help you have that discussion, get you through what an advanced directive is, what things you can add there, and we can help you complete that uh directive.

SPEAKER_04 23:05

And yeah, get on back to living. Okay, I think it's the whole that that's bad. I don't want to talk about this, but but it is sort of imploring somebody to say, think about it and talk about it and just have that conversation. Because your primary care doctor is often asking when you enter the hospital even for minor reasons. You're asked these questions. Do you think folks see that and just go, no, I'm just here to have my you know, my ankle fixed, you know, and so they'll but it's an opportunity.

SPEAKER_01 23:33

It's an opportunity, absolutely. And that gives you some power for the future, some control on what happens to you in the future.

SPEAKER_04 23:42

Absolutely. Well, that's great. Uh it's very important.

SPEAKER_01 23:45

Yes.

SPEAKER_04 23:45

Also, I was always interested in our family medicine residency program. These are doctors that want to do a little bit of everything from giving birth to babies to uh or helping with birth of babies to also with pediatrics, geriatrics. I know they get to rotate with you. So the family medicine residents, they really got the chance to sit down and talk with patients. Uh what a benefit, not just for them, but for our patients and families. Tell me about that. It's a family medicine program, they rotate with you, they they round with you on certain days.

SPEAKER_01 24:18

Yes. The family medicine residents, the internal medicine residents, both of them get to do rotations in Palliative. And it has been a very exciting opportunity because it's it's good to see how their perspective or uh their understanding of what we can offer changes, and they are empowering in doing starting those some of those conversations with with their patients.

SPEAKER_04 24:42

Well, I've known that they they've really I've heard stories that it's just it's exciting to see that the the the difference you can make in a patient's life by giving them that palliative care. Remember at the beginning of the show we talked about palliative care is relief, it's providing relief. And other doctors work on the cure, you're layered in with them, and here we're even teaching young doctors to be that. And you got nurse practitioners that are focused on palliative care, the nurses that go out ahead. What a great team. I appreciate what you and Lakeland Regional are doing as far as the patients who have serious conditions in our community, but they're getting that quality of life.

SPEAKER_02 25:19

Absolutely, yeah.

SPEAKER_04 25:20

Well, thank you again for being with us today. I mean, palliative care, we want to make sure we'll visit that topic often and remind folks about what's most important to them.

SPEAKER_01 25:29

Definitely, and and we are here to to assist. Yeah. Great. Thank you very much. Thank you. Thank you.