Episode 226: Palliative Care 101 with Carol Bush
Listen on Apple Podcasts Listen on Spotify
Transcript
Welcome to Love Your Caregiving Life. In this episode I speak with Carol Bush a Palliative Care Nurse Activist, A rural prosperity champion, a Community Builder, Change Maker, #CrazyMemaw, #GardeningGeek and proud Kansas Farmer’s Daughter. She is passionate about aligning care with what matters most when decisions are made, and spends her days helping individuals prepare to make medical decisions.
Listen to learn more about palliative care and how it can enhance your caregiving experien
Charlotte Bayala: Thank you, Carol, for being here with
Carol Bush: me. I'm super excited, Charlotte, that we connected and just to share some information and get to know one another better.
Charlotte Bayala: Thank you. Yeah, why don't you tell us a little bit about
Carol Bush: yourself? Okay, so I actually am, I, Consider myself when people say, Well, what do you do?
I'm actually a palliative care nurse, one of 55 certified palliative care nurses in the state of Kansas. And palliative care nursing is actually I consider my encore career. So as you can imagine, growing up, or being a resident of Kansas, I did actually grow up on a farm. So I also am a Kansas farmer's daughter.
So rural life, and, and really opportunities and resources. To live well in a rural community has always been a big part of my life. So I also, though, nursing is not my first career. I actually graduated from Kansas State University with a degree in ag journalism. Messaging and telling people's stories has always been really, uh, important to me.
And through, um, you might sometimes people say, well, how did you land with. palliative care nursing in that, and during the time when actually my father,, had a stroke, uh, a few years ago at age 86, my husband at the same time was diagnosed with prostate cancer, and it was during the pandemic. some of that Uh, even though I'd had experience navigating and coordinating care for many people with advanced illnesses like cancers, being in that caregiver role and an advocate for family is entirely different.
Um, kind of layer onto that during the pandemic, I heard from my colleagues. Physicians, nurses in the rural community, as well as urban, just moral distress, , and, , all of the serious illness and the changes that the pandemic brought to us. I actually then, , launched what I called my encore career. All of those experiences personally and professionally led me to looking at a specialty in palliative care as
Charlotte Bayala: well.
Wow, that's an interesting way to come around to this, and maybe it even helps support you because you came from yours. Your move towards this part of your life was so varied that you're able to see things maybe differently than other people who started in a nursing career or in a medical career and continued all the way through, so I can appreciate how that might make it so that you.
Can see a human person in a different way than other people might.
Carol Bush: Mm-hmm. , definitely. Yeah. And I think that, like I said, the, the journalist in me always looking at, telling, making people known and telling their story. I definitely think that's a huge part of practice as a palliative care professional, because we're really learning about.
An individual and family preferences for care, making them known, like what matters most to them, making that known to their care team and then supporting the patient and family through confident decision making actually at any stage and any age, uh, palliative care or palliative services are appropriate.
So let's, let's talk
Charlotte Bayala: about what exactly those services are and how they're available for
Carol Bush: people. Sure. And I think that, it's very common, that even though, the profession actually, or palliative focus in helping people manage symptoms and live strong with an advanced illness has been a part of.
The, like a big picture of medical care for a long time, actually, it wasn't until 2008 that palliative care was really recognized in our country as a separate specialty. Okay. So often people believe palliative care and hospice care are the same, and in fact, hospice care is a type. of palliative care. So I'd love to just spend a little bit just telling you some, uh, sharing with your community, some basics, because these are frequently asked questions patients and family say to me when I introduce myself.
Yeah. So first, palliative care is actually specialized medical care where we're really focusing on helping people who have serious illness. And this type of care is focused on, like I said earlier, really providing relief from the symptoms and stresses of a serious or advanced illness. And... As a team, because the type of care is delivered by a multidisciplinary team, so you can think of physicians, nurses, social workers, chaplains, also other specialists or therapists, our whole goal is to really look at improving the quality of life.
And, uh, learning what matters most to both the patient and the family. Mm hmm.
Charlotte Bayala: And so, and, and this is something that can happen at any, at any stage of a person's, life whenever they're experiencing a long term disease, or, or a short term
Carol Bush: disease, right? Yes, and in fact in the setting that I currently practice in, I'm so lucky that, I actually get to work with residents and nursing students and, and also physicians who've been practicing for a very long time who aren't familiar with palliative care.
So our motto is, it's never too early for palliative care. so some things people can think about. Are, even when we're healthy, what matters to me if I were to face a serious illness diagnosis? What are some things that matter most? And even who are people that can speak for me if I'm not able to make a decision?
Who do I trust most? So even when they're healthy, there's a role in understanding what our preferences are. And then as people, may experience, if they're worried about symptoms, as well, even access to support to help guide them and educate folks about next steps., typically, we see an involvement in palliative care support at a diagnosis.
And of a serious illness like, so you could think of cancers or dementias or, heart failure, chronic obstructive pulmonary disease, kidney diseases as well. So I think sometimes people immediately think of cancer as a, appropriate, focus or, you know, if you're facing a diagnosis of cancer, that palliative care would be supported.
But it's actually many, many of our chronic and advanced illnesses that we can support as well.
Charlotte Bayala: Yeah. And I think that oftentimes when I speak to someone about palliative, palliative care, they. Automatically equate that to hospice, because if if they have some sort of some sort of idea or have heard the word before, but don't fully understand what it is, they immediately cut the conversation with well, my loved one isn't dying.
I don't need that. And I can see there's this emotional response because it's almost as if I'm tough. They're trying to figure out, am I telling them that this person is not going to last long? And, and so then we have to ease fears and anxieties. Right. Because then I try to explain, no, that's not what this is.
Right. So let's assume, let's say somebody, just had their parent diagnosed with dementia and someone suggests to them, you should consider palliative care. How would that help that family or that, or their parent, at that time? Like what would that look like in real life for them?
Carol Bush: So what it would look like in real life when you're saying, you know, even just the first question, well, if my loved one is diagnosed with dementia, how can I gain access to palliative care?
So number one would be when you're working with your family physician, ask them Do we have access to community based palliative care so that might be an agency that may also provide home health and hospice, but they do have a separate team that helps to meet with the family. learn what matters most, connect to resources in the community and nationally, and then help to guide the conversation together with their, regular physicians and their specialists on managing not only any symptoms that might be happening, like say there's some agitation, for example, but what
What are the next steps? For surrogate decision makers, et cetera. So another avenue might be if people like I said, in the rural communities, sometimes we don't have access to community based palliative care or a palliative care clinic or physician, many teams also provide telehealth. So that can be an option, as well as, there actually is a directory and a great group of resources, in two, two avenues.
So the Center to Advance Palliative Care has health professionals facing information and training. Specific to the skill sets to provide not only symptom management, but how to, how to share information and how to, elicit preferences from patients. And then their patient facing website and resources are called get palliative care.
com. Okay. So number one, it's a, there is a directory, there, it is not 100 percent complete, but it does have, it gets you a starting place. I'm also on get palliative care. com on their blog, there, they have a great blog post about questions, families and caregivers might ask. To discern if the community based palliative care program in their community is going to meet the needs that they have.
And it is written by a physician and I'll make sure and provide that link for your community. Yeah,
Charlotte Bayala: that'd be perfect. Yeah. And I'll put it on the website as well. So I think, let's put a different scenario too, because, then if someone is, diagnosed and, let's say with cancer, and they've had treatments, and maybe they're moving their way into chemo, or radiation, so, If we're talking about symptom management, then if, let's say, a palliative, a palliative care team is available to them, then does that mean that when the side effects occur, because with chemotherapy, you know, everyone has, it depends on the drug they use and the person, it could be anything from sores in their mouth to nausea or not being able to eat, is, so then would a team Be able to help the family and that patient navigate that without having to go into urgent care
or the ER because I know sometimes, families will rush a person into the ER because they, they don't know what to do, and they're fearful, and it usually happens on a weekend when you can't get ahold of somebody. So is that some service that would be part of that palliative care team?
Carol Bush: Yes. And actually, some of the best community based programs, for advanced cancers also have strong collaborative relationships with the area oncologists, and radiation oncologists. And as you might imagine, very, very strong. Communication ties with the nurses in those areas or nurse practitioners or advanced practice providers, so that they actually are in close communication and work together.
And you've definitely hit on one of the big values of palliative care is in actually helping to support folks. And to be that extra layer of support, but also to help prevent, you know, like the. You know, head off some of these, symptoms before needing to go to the emergency department or, or the hospital.
And as you, your community probably knows more and more services are available in the home, not just through home health, but often mobile medical, mobile as well as telehealth or telemedicine. So often our community based palliative care programs are tied into that as well. And they can again, not, they are not to supplant the great team, but really to work in collaboration and support, and prevent those Admissions to the hospital and the ed.
Yeah.
Charlotte Bayala: So then if someone were considering, or let's say they're listening to this right now and they're realizing, wait, this is something I need. This is not something that necessarily. You have put in place, and then stay with for, for forever, right, there's a, you can go on and off it depending on how the health of the person progresses.
Carol Bush: That is correct. And, actually the a palliative care, consult, it may look different depending on where you're receiving your care. So if you're at home, or versus the hospital, I work within a hospital or a healthcare setting. And so, actually, Patients can ask for a palliative care consult, families, any provider, as well as the physicians may automatically consult us when people are facing a change in their health and or are considering a medical treatment or a procedure that they just need to talk through some of those choices.
But it is definitely also something I think, It really can continue based on each person's need and preference. And I think that a key issue also with palliative care is that people often say, well, you know, not only how can I access palliative care services, but will my insurance cover it? And so the short answer is yes, typically insurance like Medicare, Medicaid and private insurance do cover.
Just a caveat is that in our country, Right now, there's not a defined palliative care benefit. So we do have in our country through Medicare, a defined hospice benefit. So there are a group of services that Medicare provides to families. And within palliative care, that's something as a community of patients.
Families and professionals. We are advocating for policy change to include more robust reimbursement in palliative care services, but typically through a home health benefit or if people have nurse practitioners that come into their home, it's billed in that way.
Charlotte Bayala: Okay. That's good to know. And then you mentioned that you are. In a hospital setting. So does that mean that, if someone were to go in for surgery, for whatever disease or medical condition that they have, Then, while they're there, they can ask for a palliative care, consult, and that would help them with how they progress after having this, the surgery or the procedure done, so it can start that early.
Carol Bush: Yes, an exact and actually, it is not uncommon that if a person in my, in the setting I practice in the inpatient or hospital setting, sometimes we are consulted, when a person is in the emergency room and being evaluated because for example, possibly they have a serious infection or a pneumonia and.
The team needs to understand from the patient and family are, you know, are you interested in what are your preferences for treatment or are you focused more on quality of life? Especially in the situation of a very serious pneumonia where a pulmonologist may say, Oh, it looks like, you know, we might be looking at a risk of needing to intubate.
Those types of decisions. But we also, if people have a planned surgery for, actually an advanced illness or cancer, even after that surgery, they do like to consult to say, we just want to talk about going forward, what resources are available in our region and our community to help you based on your goal.
And our goal then is to match them. Learn what their goals are and match them to a service provider in their region that can help them get connected to manage further symptoms or, if they're to support them as they're deciding possibly, just as a cancer example on, okay, am I interested in, initiating chemotherapy?
Am I interested in initiating? Radiation therapy.
Join us next week as we dive deeper into the importance of palliative care and its focus on improving quality of life both for you and your loved one.
If you are interested in more information on palliative care all the organizations and links mentioned in today’s episode with Carol they are included in the transcripts at www.Love your caregiving life .com
Thanks for listening.
Links
Carol Bush - https://www.linkedin.com/in/caroljbush/
Palliative Care Resources
https://getpalliativecare.org/
