Episode 227: Improving Quality of Life and the Importance of Palliative Care with Carol Bush
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Episode Transcript
Welcome to part two of my conversation with Carol Bush Palliate Care Nurse Activist. Today we dive deeper into the importance of palliate care and its focus on improving quality of life for both you and your loved one. Let’s get started.
Charlotte Bayala: Now, I know that... A lot of people are listening to this and thinking, my loved one has been in the hospital multiple times for multiple surgeries for whatever the disease is, cancer, you know, heart disease. And this is the first time that I'm hearing about this, right?
And so, and that's why we're here, right? To educate so that people know how to advocate for their loved ones. And I have to be honest, my husband has been in major medical centers and we have never been approached or I have never heard of palliative care until I became involved with other cancer organizations.
So if I haven't heard about it, I can imagine a lot of people haven't. And it hasn't been. Offered in a way that it was, very evident that that's what the, the offer was. So, if someone knows or, or they are, they know in the future their loved one will be going into a hospital or it's happened before, it might happen in the future, advocating for yourself and for your loved one oftentimes is a way to get the process going.
Is there something specific that if they're in the doctor's office, the oncologist's office, the surgeon's office, is this something that would be worth it to ask for before that that procedure happens? Or is it something that needs to happen after they're already in
Carol Bush: the hospital? And it's appropriate to ask for connection to a palliative care professional at actually any time.
So even in the situation, for example, let's say that the individual is really worried about some symptoms that That are occurring. And, you know, being led to their family physician who then does some diagnostics and says, Okay, now I do. It looks like we, you know, need to proceed with a definitive diagnosis.
And then, when they're looking at. Based on your example of the cancer is just that conversation with the oncologist just mentioned, you know, what about, I'd really love a connection to palliative care professional. And, are you able to facilitate that just asking either the physician or the nurse about that?
And again, it's. It is never too early for palliative care because even when we're worried about symptoms and we don't have a definitive answer, it's appropriate at very minimum to seek out through Our, for example, get palliativecare. org to learn about what questions to ask a healthcare provider or what if you're facing with the unknown and maybe a serious illness, what are some things you might think about, figuring out what matters most to you going forward.
As well as depending on the illness. So if you're looking at. Heart failure. Mm-hmm. , the American Heart Association. So I would look at those advocacy organizations as well. Okay. That's good to know. I don't know that that has helped, but I definitely, your advice really in any setting is to ask mm-hmm.
and be an advocate and say, is palliative care. Support would that be appropriate and how can you help me get connected? Yeah, yeah And
Charlotte Bayala: and it's good to know that all it's asking is the is the first step, right? If it's not offered fine You know, I think sometimes Doctors and nurses might think that We, we all understand everything that's available to us because they're so busy taking care of other people, and that that isn't usually the case.
And so knowing that, you know, start the conversation, ask when you're there, or, or if you are listening to this and you don't have an appointment coming up, but you think that that would be really easy. A good thing to know about send them, you know, sending a message now that we are in the digital world in terms of having doctors appointments and communicating.
It's a lot easier to be able to send those messages through there. My charts or, you know, however you communicate with your doctor because having that open line of communication is good. And asking questions is key in understanding. Always.
Carol Bush: And I was thinking, actually, there's one other way, I think, because each each community and state might be a little bit different.
There are many, many state health departments that actually have a, palliative care or serious illness Coalition. Okay. Or they may have, and, and I'm a member of, so I'm in Kansas and we have the Kansas Palliative Care and Quality of Life Advisory Council. Again, we do receive some technical assistance via the Center to Advance Palliative Care.
So again, I mean, it's really my go to place for evidence as well as connecting. But, whatever state your listeners are in, they can also look to their health department and those folks can get them connected as well. That's good
Charlotte Bayala: to know. Yeah. Because, you know, becoming educated about it and knowing what you're asking for, because that's the other thing, someone could be listening and thinking, oh, well, this, I feel like this is something that I need, but then.
coming into a place where they're asking for it, and then they might be asked, All right, well, we can set up a consult. What would you need help with? And they're like, Well, I don't, I don't know what's available. I don't know what all I have to choose from. But from what I understand, though, is that this really, when it we come down to the essence of it all, is that this is about quality of life.
For the person that is being treated.
Carol Bush: That is absolutely correct.
Charlotte Bayala: Laughter This is, yes, their quality of life, being on focus, will, would also help their caregivers because they're also able to support their loved one in a way that they would like to be supported. Not always do those conversations happen, spontaneously and organically within a household, but for someone to have palliative care, then the focus is really on how.
How can we make, your life as robust as you would like for it to be if I'm, is that correct?
Carol Bush: Exactly. Exactly. So it's not just, again, just to kind of recap a little bit, not just the focus on the relief of symptoms such as pain or shortness of breath, fatigue, all those things we normally think about, nausea, et cetera.
Palliative care really helps you and you being patient and family carry on with your daily life. Mm hmm. Yeah. And I think that, you know, a thing that you mentioned was, also in those, those conversations that don't always naturally happen in families. Just to give an example, in my own family, and I've been having conversations with people about serious illness my whole career.
And in my own family, when my father, had his stroke and then we were, you know, as a family trying to make decisions for, for actually over two years, step by step. Oh my gosh. I, I tried everything I could and my parents were very like, Oh, no, you're I do. I don't want to have palliative care. That's not what it's about.
And I said, Okay, if you love me, you know, I need to know what matters most to you. And please. It would mean a lot to me if I, if you would meet with one of my colleagues and have them talk with you. So even the palliative care, certified palliative care nurse had a very wonky discussion with her own parents.
Well, now, of course, after that, and it was a. A two year ongoing conversation of what matters most, and now my mom is telling all her friends and she lives in assisted living. She has, She, she lives well, but she also has a fib and she says, I'm not taking Eloquus. I am going to let whatever happens happen.
But now her whole motto is, you need palliative care, she tells all her friends in assisted living. Call Carol. You need palliative care. It's never too early for palliative care.
Charlotte Bayala: That's awesome. You know, it's always good when you finally see, people you love, understand the message that you're trying to, tell them.
But you bring up a really important point. If someone has a family member in assisted living, is palliative care also available?
Carol Bush: Oh, yes, it definitely is. And so again, kind of going back to, palliative care is a team to help with extra support. Well, that supports not only for a patient and their family caregivers, but professional as well.
And so for in the example of my own family, because in assisted living, That's like, like you're in an apartment. Basically, you are eligible for home health. And so there are some models of community based palliative care that are structured within home health. And then once that skilled need has been met, there were other Okay, thank you.
Models of palliative care with a nurse practitioner who could visit, and ongoing. And then our family, we elected past the skilled need. My mom still needed those commun those conversations. And so she elected to pay privately for that continued service ongoing and for So there are people that are able to do that, but yes, people in, and even in the long term care setting, and we collaborate with many long term care, whether they are the traditional nursing home or like the group home comfort care home, typically the support there might be through.
The medical director may have a specialty in gerontology and palliative medicine through family medicine, or they may contract with a nurse practitioner led, palliative care model that, where they can come into the setting and just again, help to manage symptoms and be a resource to all of the folks, the circle of support, continue those goals of care conversations and help people live strong in long term care and may or may not go to the hospital.
Yeah,
Charlotte Bayala: that's really good to know. And And I find that the more I learn about it, having those conversations is one of the key aspects of it that you might not necessarily get from the team that you have put together that is mostly medically. That's, that's their, their, the way that they, are part of the team.
It's their medical team, maybe a social worker. But Being able to have someone to have discussions about treatments, where a lot of times people will, will be told, well, radiation is usually the next step, and they want to have A second opinion, but not from necessarily another oncologist. They wanna know, well what will this mean for my life?
Like, how, how will this change how I live? What can I expect? And so being able to have some of those conversations instead of looking online and trying to figure out mm-hmm. from, you know, online support groups. 'cause everybody is different. Every treatment is, it can be varied and so being able to have a conversation with someone who has the knowledge to be able to, to provide or connect people with the, with the information that they need, could be one of the best things for a family to have when they're faced with uncertainty.
Carol Bush: Oh, absolutely. And that is really. The majority of the conversations I think that our team, our inpatient nursing team, has is really looking at not always the nuts and bolts of the, the, the diagnostic and the treatment decision it is talking about because people do want to know, okay, well, what will.
What will, will I be able to walk and talk and eat and oh, you know, am I going to need 24 seven care? Well, I really want to be home. I don't, I don't really want to go to this place or that place. Or what does that care look like and what kind of support is my family or my circle of support because I, you know, we all have families that look different, right?
They are not, they're not related to us a lot of times. So that's why I use circle of support a lot. A lot of people are cared for by Friends and neighbors. So looking at well, what does that mean? And also, are what is that going to mean for my caregiver? Are they going to, are they making a decision about quitting their job?
What's that going to mean as well? Right.
Charlotte Bayala: And, maybe even giving the patient the opportunity to voice what They, they would really like to have done or not done, having someone advocate for them to really look into what do they want to feel, what do they want to go through, instead of, well, if, if radiation Is going to give me more time with my family or my family would really like for me to have radiation, but I'm going to tell you, I don't really want to do it because I, I don't like, I don't want to, I don't want to go forward into that phase of life with that procedure with the symptoms that come after.
I think I'm, I'm done. Like, I just want to live. So then that would allow them to have that conversation or to think about what do they really want instead of what do they want to do for their family. And I think that's an important thing to be able to do because that's not the kind of conversation you're going to have in a doctor's office, right?
Carol Bush: And that's one thing, especially that palliative care teams are a big focus is, helping folks navigate even having that conversation with their family and that our focus is also taking the time to facilitate and have those conversations. And as you might imagine, sometimes in the inpatient setting, that's, again, limited and but why As an inpatient palliative care nurse, my big focus is making sure I get These people, I get people connected to someone who can help facilitate going forward.
So it's exciting to me to see that when, as palliative care first became a separate specialty, typically we saw inpatient settings primarily, but even in the three years that I have transitioned from. You know, like advocacy and oncology nursing to palliative care nursing in the inpatient setting.
I have seen a huge growth in community-based palliative care programs in innovative ways that palliative physicians are connecting with people in underserved areas. And that is because of patients. Drive changes a lot. Right. I mean, it is in any business, a client or a customer or someone who uses this service drives change.
And many people are living with serious and advanced illnesses and they do need access to resources. And so you can really see a huge growth. And I think the pandemic was a tipping point. Thank you. For that. Yeah, it
Charlotte Bayala: really made doing things virtually more acceptable and you know, hospital systems had to find ways to make that an option.
And so I'm happy to have seen that that hasn't been pulled back now that people have started to go in person. And I just, it's so important to be able to connect in a way that Especially with this, can this part of your care to be able to connect, in a way that's easy for you. So it's good to hear that, you know, there people are being creative about how to do that because quality of life might mean I can't drive two hours there and two hours back.
Exactly. Or I can't afford it. So it's good to hear that they're finding ways to meet people where they are and making it accessible to them. Because then that just will open it up to someone, so many more people. It might mean that they have to, those people have to search a little bit more or, or find someone to help them.
Find the creative way to reach out to the people that can help them. But, you know, like we said earlier, palliative care is not, this is, this isn't, let's do this to help a person die. This is to help a person live. Yes,
Carol Bush: it's all, it is all about how, how you want to live with a serious illness. And getting connected to those resources, you know, making a difference and then having those ongoing conversations to make sure that your, your goals and preferences are met.
Charlotte Bayala: Right, and from what I understand, it, it could be for. A specific amount of time you could have that conversation and you can have that support and then as you begin to feel like you have kind of this new path for yourself, that you, you don't have to stay on on palliative care. It's not for forever.
It can help you give you a starting point, especially, you know, when your life has just been turned upside down with a diagnosis or surgery and you're trying to figure out what life, like, how do I do this? And I think it's important when people, can say, all right, I am not the same person I was two days ago.
And now I have to figure out what life is going to be like. And if you can start moving forward, moving forward. that helps you live a life that you want to or love your life a little bit more than always equating how you are living now to what you used to be able to do. You know, and I think having those conversations about, all right, so what do you, how do you want to see this, moving forward?
That's a good, that's just such a good way for a person to come to terms with this isn't fair. Like nobody thinks that, you know, cancer is fair or any other disease, but we can also say, all right, but this is how I want to live. And I think that having that support is. Is so important in it. It's so it always, it makes me sad when people don't understand that that's available to them.
Carol Bush: And that's why, you know, many of us are involved in again, advocacy, building coalitions, messaging to make sure, that the accurate information and messaging is getting out. Out there and available for people. And again, why I really rely on, the center to advance palliative care and patient facing get palliative care dot org, to, to share that information with folks.
Charlotte Bayala: Yeah. Oh my goodness. Thank you. So let's say someone palliative care for the first time. What What would be that one message that you you find is the most important thing for someone to know?
Carol Bush: Well, actually, it's really two things or maybe three, but it is like, it's never too early for palliative care and it is supportive care that's appropriate at any age and any stage of illness and to get palliative care, ask for it.
Charlotte Bayala: Nice. I love it. I love it. Thank you so much, Carol, for being on here with me. I really appreciate it.
Carol Bush: You bet, Charlotte. Take care. Thanks
If you are interested in more information on palliative care all the organizations and links mentioned in both episodes with Carol are included below.
Here is how to find Carol Bush and the organization mentioned in both her episodes.
Carol Bush - https://www.linkedin.com/in/caroljbush/
Palliative Care Resources
https://getpalliativecare.org/
