- Just because you or a loved one has a serious illness doesn't mean you can't have a better quality of life.

Tonight, we learn about palliative care and all the options patients can take advantage of.

(upbeat music) - Good evening and thanks for joining us for WTVP's "Docs on Call".

I'm Mark Welp.

There are a lot of aspects to fighting serious illnesses.

Something to keep in mind is palliative care.

It can help reduce physical and mental suffering.

Casey White and Kristine Redfield are nurse practitioners specializing in palliative care at Carle BroMenn in Normal.

Ladies, thanks for coming in.

We appreciate it.

- Thank you for having us.

- I guess we should start off by explaining.

What is palliative care, Casey?

- So palliative care is a specialty, a subspecialty really of medicine where we, Kristine and I, see patients with chronic illnesses, progressive illnesses such as heart failure, COPD, dementia and cancer, just to name a few disease processes.

With that, we support the family in establishing their goals of care.

And we help with symptom management such as with like a cancer patient, for instance, we help manage their pain, help manage anxiety, constipation, things like that.

So... - Now I guess we better explain too how this is different from hospice care, which I think more people are probably familiar with that than palliative care.

So how is this different from hospice care?

- So palliative does get confused with hospice care often.

Both help to provide support to patients and families.

The important thing to note about palliative care is that patients can benefit from palliative care services at any point throughout their disease process, even while they're still pursuing all active disease treatments including hospitalizations, chemotherapy for cancer-related treatment.

Palliative can follow along to provide that support and symptom management to help them achieve better quality of life in spite of wherever they are in their disease or whatever treatments they are receiving.

- So typically, if we can give kind of a ballpark view, let's say someone is diagnosed with cancer.

Would they get palliative care towards, I don't know, as their disease progresses?

At the very beginning?

Kind of depends on where they're at I guess in their treatment.

What typically do you see?

- So it really depends on the patient and what symptoms they're having.

Some patients that are receiving, you know, cancer treatment do very well.

They don't have symptoms such as pain, nausea, fatigue.

A lot of patients do develop those symptoms at varying points throughout treatment.

And so anytime that those symptoms begin to limit their quality of life, they can be referred to palliative medicine to help symptom management.

Again, we don't, you know, help better quality of life even while they're receiving those treatments that maybe are limiting them in that aspect.

- And we've been talking about cancer.

And you mentioned some other medical issues that people may have.

Is cancer a big chunk of your clients in palliative care?

- I would say for right now, yes.

But we also, being a newer department, we also have seen, are seeing some patients with COPD and other advanced respiratory diseases as well as some heart failure patients.

So, yeah.

- So let's talk a little bit about the process and how this works in terms of, would a primary care physician say, "Hey, you should look into this"?

Or would maybe a cancer specialist say, "You should look into palliative care"?

How does that work?

- It really can be any physician that that patient is following with.

And it also depends sometimes on their disease.

If they're an advanced heart failure patient, they're seeing their cardiologist more often who's an expert in that specific disease process.

And so they may help determine when that patient would benefit from palliative services.

If it's a cancer patient, a lot of times we do get those referrals from their oncology providers who attempt to manage symptoms a lot of times.

And when it gets to be a little more advanced, then they send them our way and we help where we can.

- Let's talk about when they send them your way.

Casey, you're specializing in palliative care, but I'm guessing you're also working with other doctors and nurses.

Can you tell us a little bit about the teamwork aspect of that?

- So our team, so in palliative care in general is a multi or interdisciplinary specialty.

So we are a teammate of a physician, APRNs, we have a nurse and we also have a chaplain and then other... - Other people?

- Yeah, other people.

Yeah, a part of our team too can be like social work and things like that for especially on the outpatient setting so.

- That's interesting that you mentioned social work and maybe a pastor.

Because that's obviously talking a little bit more about the spiritual side and the other things that people may not think of in terms of the psychological effects that it cannot only have on you but on your family too.

Can you tell us a little bit about that?

- Yeah, so any sort of chronic illness, especially, you know, ones that tend to progress and we can't necessarily cure, it's gonna provide a lot of stress for patients and families.

And families do provide a lot of that caregiving to those patients.

And it's not always just physical distress.

There's spiritual, psychological.

And so it does help to have like our spiritual care service and available social worker case management to help provide support and also, you know, information about available other services in the community that can help alleviate some of those added stresses: you know, Meals on Wheels, those kind of things that help support the patients as well.

- Sure.

So when all this starts, kind of walk us through.

You mentioned some of the other people that you rely on during this process.

But how does it start and where does it start?

Kind of take us through maybe an example of that.

- So for example, if we have like a patient with COPD and they're seeing their pulmonologist often, the pulmonologist can then send a referral for the patient.

And then our clinic nurse, and this is for outpatient, our clinic nurse will then call them, call the patient and the family, explain palliative care to them and what we offer and what our service looks like.

And then she will then schedule an appointment with either Kristine or I. And that's on the outpatient side.

We also see patients in the hospital at BroMenn as well.

And so, for instance, if we were to have an ICU patient, one of the intensivists or hospitalists would consult us.

And we would then go and see the patient ourselves, introduce ourselves, and then continue following that patient while they're in the hospital.

And then if they wanted to follow with us outpatient, then that's when we would just, our clinic nurse would follow up with them.

- Okay, because I know and we talked about the difference between this and hospice.

And with hospice a lot of times, it's at home or maybe a specialized facility.

But like you said, with palliative care, it sounds like it could be anywhere.

- Yes; so we don't offer home services but we follow within our clinic.

And we can follow at any frequency that benefits the patient best.

Some patients, we'll see every couple of weeks.

Some, we follow with every month to three months depending on what their needing support level.

We also understand that our patient population is not always the easiest to get physically to and from appointments, or they have a lot of other medical appointments that they are having to make.

So we do our best to try to make it the easiest for them to see us, whether we arrange it when they're seeing another specialty at the same time.

But we also do a lot of telephone or telehealth visits via video so that we can continue to follow with them and help them without adding stress of having to physically make it in to another doctor's visit.

- Sure.

And what are some of the biggest needs of these kind of patients?

You know, we talked about if you go through chemo, maybe you're having side effects from that.

Or with COPD, you're obviously having trouble breathing.

But what are some of the big complaints and big things that people want this kind of help for?

- I mean, those symptoms do play a big role in it.

And a lot of patients, sometimes they just want an extra layer of support.

They just want somebody to help talk to, somebody to kind of monitor everything that they're getting from all their other specialties and kind of bring it into one central area, explain everything to them, really get to know them so that we can help tailor all of the care and treatment that they're getting to things that are really important to them and really make it more of a patient-centered approach.

- And for palliative care, is this something that you think is becoming more and more common across the country in terms of hospitals offering this kind of service?

- I do, yeah; yes.

I mean, I think it's becoming an important specialty just because more and more people are living with chronic and progressive diseases.

And more and more people are experiencing like repeated hospitalizations.

And that's one thing that Kristine and I's specialty can help out with is, you know, a lot of patients are hospitalized because of their symptoms, because of their progressive diseases.

And our specialty helps minimize the hospitalizations.

Not that we don't want them going back to the hospital, but just if we can help control symptoms at home while they're still getting their treatments, you know, it helps keep them comfortable at home still, so.

- And it provides a level of continuity of care.

A lot of times with today's medical system, patients have inpatient providers and then follow up with different providers outpatient.

Whereas we can see them in both settings.

And so it just helps to make sure that nothing's getting missed in that transition period between being in the hospital and going home.

- So what about insurance?

Does insurance cover this kind of care?

- It does.

We do get that question quite a bit.

And palliative medicine is like any other medical specialty: cardiology, pulmonology.

Palliative medicine is covered by most insurances and Medicare as any other specialty would be.

- Good to know.

I know that, you know unfortunately, a lot of people will decide what kind of treatment they're gonna get based on if their insurance is gonna cover it.

- That's right.

- Now did you both go to school specifically for this specific area, palliative care?

- I know that my advanced degree is as an Adult-Gerontology Acute Care Nurse Practitioner, not specifically in palliative medicine.

But my goal since very early on in my nursing career was to go into palliative medicine.

So everything kind of since that time has been with the goal of of getting here I guess.

- [Mark] What about you, Casey?

- I have the same certification as Kristine.

I'm also an Adult-Gerontology Acute Care Nurse Practitioner.

And I originally went into this specialty 'cause I used to be an ER nurse and so I thought, you know, I was always going to be working in the hospital with ER type patients.

But when I started back to school to obtain my master's degree, I worked as a hospice on-call nurse.

And that's where I fell in love with it and have worked in this specialty since 2019, so.

- Well, it takes a special person to be a nurse or a doctor, that's for sure.

In especially this field, what kind of training do you have to have?

I guess, what kind of characteristics as a human being do you have to have?

Because it seems like you need to be pretty empathetic, sympathetic around the people you're dealing with much more maybe than an ER nurse who's gonna see one person for an hour and never see 'em again.

- Right.

- I think it partially is wanting to help the whole patient.

Sometimes, you get so caught up on the one disease that you're treating or one area of the body and that we forget there's an entire person with beliefs and values and things that are important to them.

And so with palliative medicine, that's something that we wanna make sure whatever we're treating and whatever we're doing is what the patient wants and helps them have the things that are important to them and the quality of life that they want.

- Do you see that often where patients, you know, maybe a doctor wants to treat a patient a special way or with a certain treatment and the patient doesn't want that, they would rather go a different route?

- Yes, we do see that pretty often.

And I think that's where our specialty also plays an important role.

Because we help.

That's where like our goals-of-care conversations and getting the families together with the patient becomes important just to really establish what's important to them, what their goals are, you know, give them their treatment options versus, you know, what life could possibly look like without those treatments, and go from there on establishing really what their goals and their wishes are.

- Is that a hard talk to have with patients and families?

- It very much is a hard talk.

And unfortunately, it's something that not a lot of people want to think about or talk about until they have to.

So just getting the conversation going sometimes can be difficult.

But I personally find, usually, once you start the conversation with the patients and the families, by the time they're done, it's provided them with some clarification about things that maybe they hadn't thought about up to that point even.

- And when you have those conversations, give us just some more examples of what you might talk about.

- For starters, we normally, well, I will ask them what all they understand first of all.

Because, you know, a lot of times, they come into the hospital and they have multiple things going on at once.

And so, it's always important to ask them what their understanding is first, and then for them to give me permission on like, "Can I explain further what's going on" if they don't understand something.

We will talk about their code status.

We'll talk about, you know, who they would want to be as their healthcare power of attorney.

And then most of all, we talk about, you know, for instance, if they are talking about undergoing a procedure.

Or if you have a patient, for instance, with end-stage renal disease or kidney disease and we're discussing whether or not to start dialysis, we talk about the risk versus benefits of dialysis and just what that would look like if they started it, if they don't start it, and kind of go from there.

- So you're really giving them all the information they need to make the decision, not you, but you're just telling them what they need to know.

- Yeah.

- Yes.

That's something very important that I always tell the patient.

"Good, bad and ugly, I want to provide you "with all of the information that I can "so that you can make the best decision for yourself.

"And whatever decision it is that you make for yourself, "that is what I wanna support."

- And will a patient typically have family members there when you're having this talk?

- Most of the time.

I mean, if there are family members involved in their care, yes, at least me, I prefer to have like as many family members there as possible just so that way everybody's hearing the same thing and hearing the discussion.

And that way too, the family's there to support the patient.

And 'cause I know just from personal experience, even if you're working in the medical field when you're being given serious news like this and having serious conversations, the anxiety of hearing these conversations can be very overwhelming.

So we always, you know, recommend having family and friends in the room to help listen in on the conversation.

- Yeah, totally makes sense.

Are there any patients who wouldn't benefit from this kind of care, you think?

- I mean, with the appropriate diseases, most people would benefit on some level.

There are some, you know, misconceptions in terms of the kind of pain that we treat.

Some people think any sort of chronic pain automatically would be a candidate for palliative medicine.

And that's not always the case.

Some chronic pain patients are better served through an interventional pain service.

But for most patients with appropriate illnesses and those chronic progressive illnesses, they can benefit from our service in some way.

- [Mark] What's the pain service do?

- So they would treat more of like chronic back pain, things that don't have necessarily an underlying progressive cause such as cancer, lung disease, renal failure, those kinds of things.

- So things that are serious but not necessarily potentially fatal?

- Correct.

- Okay.

And do you deal with a lot of... I know back problems are awful.

Do you deal with a lot of people who do have those issues?

They're not necessarily, you know, a terminal case but they're miserable and in a lot of pain.

- We don't generally see just the chronic musculoskeletal like back pains, you know, musculoskeletal type pains.

We generally, like Christine kind of said, refer them to just a pain specialist.

When it comes to treating pain, we mostly focus on cancer-related pain.

And from that aspect, yeah.

- Sure.

What haven't we talked about that you think people need to know about this kind of care?

I know we can't fit everything into half an hour.

But, you know, we wanna get the word out there that, you know, these options are available.

I guess, you know, we should start with, you know, if someone's watching this and they think, "Oh, maybe myself or a family member "would benefit from palliative care," where should they start looking?

- Call your primary care provider and they can place a referral for our palliative service, or any palliative service that may be local to you for at least information.

If we get the referral and it's not necessarily appropriate for our service, we can certainly point them in the direction of who can help them.

But any provider that they see can certainly refer them to us if they're interested in at least getting more information.

- And do you require a referral?

- Yes.

- Okay.

Can you give us some examples.

Maybe each of you give us one example of someone you've helped that has just been very miserable and unhappy and fighting whatever battle they're fighting.

And give us an example of how palliative care has helped them.

- I have a patient who is recovering from like oropharyngeal cancer, so a mouth type of cancer.

And this patient has been experiencing a lot of pain.

They've had several surgeries.

And with those surgeries and just with the leftover cancer that they have have just had a lot of mouth pain.

So it's taken a few months to get where we're at today.

But in adjusting the pain medications, this patient recently was able to go travel out of state to see their family.

And pain is better controlled than it's been since they were diagnosed with this cancer diagnosis.

So I would say that's one of my wins, I guess.

- Yeah, that's good.

What about you, Kristine?

- And I have actually a couple of patients that the patient has, you know, a fairly serious progressive illness and their spouse is a primary caregiver, which comes with a lot of stress.

And so, in providing services and support to the patient, I also provide a lot of support to the spouse as well, which helps alleviate their stress and helps them to be able to then be a better caregiver to the patient, to their spouse.

And so, I like that it's not just the benefit of the one person.

I get to benefit both of them and provide support to both of them so that they can continue living their lives and doing the things that they love.

- Yeah, we often forget about the caregivers, and they're so important.

- Yeah.

- What are some of the things that they need?

I assume just someone to talk to is probably a good start.

- Yeah, one example that we've had recently was we had a patient with a progressive neurologic disease and the family wasn't quite ready for hospice yet.

And family didn't really understand what we could offer them.

So we just started out having weekly telephone calls with the family member.

And those weekly phone calls helped us build a relationship with that family member, helped us build trust with this person.

And the family member ended up calling our clinic nurse just sobbing just because they were just becoming very overwhelmed.

They were the primary caregiver of the patient.

And so just by building that relationship, we were able to just provide that kind of support too.

So, yeah.

- And I've worked with some family members with just kind of discussing different ideas.

You know, the goal is to, say, keep a patient at home with them as long as possible.

So we just sit and we talk.

"What do you have at home?

"What could we do?

"This may be a really good idea to try."

You know, equipment or just little things around the house that makes it easier for them so that they can keep the patient at home where they would prefer to be.

- Well, you do a great service we appreciate.

Like I said, not everyone could do this type of thing.

But you two seem to get a lot out of it for sure helping these patients.

So again, we want to thank Casey White and Kristine Redfield.

They're nurse practitioners.

They specialize in this.

And they are at Carle BroMenn in Normal.

Ladies, we appreciate you coming on today and appreciate your time.

- Thank you very much.

- Thank you.

- All right, thank you.

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