Inside the Home-Based Palliative Care Model That’s Spreading Nationally

speaker-0 (00:02.67)
Hey folks, welcome back. Today we have Dr. Susan Engidinos from USC. Susan, it always feels better if somebody actually tells us a bit about themselves and introduces themselves first. So why don’t you go forward? And by the way, if I screwed up your last name, I really want to apologize.

speaker-1 (00:25.934)
Not a problem, and I’m very used to it. But I will repeat it. My name is Susan Engidanos, and I am an associate professor at USC in the Leonard Davis School of Gerontology. I’m a health services researcher, and my area of focus has been on care for seriously ill. So looking at new models of care for people with serious illness, looking at ways of improving access to care for people with serious illness.

looking at how we can better prepare people for, you know, a catastrophic illness or, you know, something bad. And oftentimes, you know, that’s always something we always put off in the back of our heads that, we’ll deal with that later. That’s not going to happen to us. And I also teach classes that are very similar to my research. So I teach a class on end of life care.

And I teach another class on death and dying that kind of covers the whole spectrum. And I’m very lucky to teach a class on ancient civilization, death and dying practices in Italy.

speaker-0 (01:35.63)
Okay.

Okay, so for everybody that’s watching, the reason why I wanted to talk with Susan was the age range that we deal with is basically from 55 upwards. Now we have people that focus on retirement, people that focus on, you know, older ages, that sort of thing. But one thing we never like to think about is end of life. And I think both as

me being a 61 year old having a 94 year old father, it’s something in the back of my mind. And, you know, at the end of the day, we also want to be preparing ourselves if we’re ever in that type of situation. So, Susan, thank you for very much for that. How did you fall into this area? Just out of curiosity, because like I said, a lot of people don’t like thinking about this.

speaker-1 (02:29.422)
That’s a really interesting question. And it happened during the HIV and AIDS epidemic, the height of the epidemic. And we were looking for new ways of providing better care for people with HIV and AIDS. So it was a younger generation. It was a better increased focus on quality of life. And that approach kind of got me in touch with

a physician at Kaiser Permanente, his name is Dr. Richard Brumley, and we worked together to design and test a new model of care at the time. It was a home-based palliative care model.

speaker-0 (03:11.03)
Okay, so you’ve been doing this for a number of decades.

speaker-1 (03:15.438)
Mm-hmm. About, I would say about 20 years.

speaker-0 (03:19.822)
Okay. So from when you started to where we are right now, how have things changed or have they?

speaker-1 (03:27.244)
You know, it’s an interesting question because I’m going to tell you a little bit about my research because it’ll explain my expectations. So we did two really great research projects and they both showed that home-based palliative care and let me talk a little bit about what that is for people who may not know what palliative care is. So palliative care is a specialized type of care for people with serious illness. It’s provided by a specially trained team

that may or may not include a doctor, a nurse, a social worker, and a chaplain, and other support services. And palliative care focuses on quality of life, so providing relief of the pain and symptom of a serious illness, providing psychosocial support. And the goal is really to improve the quality of life for both the patient and the family.

The great thing about palliative care, which makes it very different from hospice care, is that it can be provided alongside of curative care. So that changes everything, right? So palliative care can be provided for somebody who’s going through, let’s say, a woman’s going through breast cancer and she has a lot of symptoms. She’s having a hard time with the chemotherapy or the radiation. And the palliative care team can come in and support her.

speaker-0 (04:32.151)
Okay.

speaker-1 (04:51.116)
and stay with her until she no longer needs that and she’s recovered and is fine. So it could be episodic in nature. Our early work focused on people who weren’t going to be getting better. So when we first did our early research, we looked at people that were very seriously ill, but either didn’t yet qualify for hospice because hospice is for those last six months of life or for people who didn’t want to go into hospice.

Because the other thing you have to do when you go to hospice is you have to give up anything that’s curative. So you can no longer pursue life sustaining treatment. So those type of interventions are not part of the hospice. But with palliative care, we aim to see if could we get people earlier? So looking at people in the last, not just the last six months, but maybe the last two years of life.

And could we improve their health care? Can we improve their quality of life? Could we get more people to be able to die at home, which most people prefer to die in the place they call home? So that’s where our goals and we found that we were able to improve the quality of life, quality of care, and improve the rate to people who were dying in their home.

And the other thing that was pretty enormous as an outcome, it wasn’t necessarily our primary outcome that we knew it was going to be important to look at, is that we found that when you provide better care for people, you actually save money. And that’s something really important in health care, because in order for a program to be replicated and basically

brought on by an insurance company or a payer, it has to either be cost neutral or save money.

speaker-0 (06:55.726)
So they’re not online, so…

speaker-1 (06:57.496)
Right, exactly. So we found that we basically loaded all this care in the home. So we had many, many more visits in the home compared to our randomized study arm, which received a standard health care. But on the other hand, they didn’t go to the emergency room. They could have. They weren’t told not to go. They could have gone anytime they needed to.

But we were able to avoid that by providing better access to care. The other thing about palliative care in our model was that we provided, and this is, hold onto your hat, because we provided 24 hour a day, seven day a week access to a medical professional. So if there was a crisis, had to.

speaker-0 (07:45.23)
From the home? Wow, okay.

speaker-1 (07:47.256)
From the home.

So they would have telephone access and send somebody out if needed. But for a caregiver dealing with somebody who may be, let’s say, short of breath, it could be really alarming. having somebody to walk you through what to do with moving the oxygen level up higher or having them take a medication or whatever it is, having somebody walk you through could be very rewarding. So we did two studies.

And one was just a comparison study. We compared people who got palliative care with just people that were matched, a matched cohort of group of people that were getting home health. Our outcomes were exactly the same as our outcomes in our randomized control trial. In fact, we found that we saved one third costs. And that’s pretty significant.

speaker-0 (08:42.092)
Yeah, what were some of the costs that are cost areas that you’re actually saving in?

speaker-1 (08:47.606)
Emergency visits. OK, so when you think about it, OK, so if somebody has a crisis in the home, they don’t have access to care, they’re going to call 911, cha-ching, cha-ching, right? They’re going to go to the emergency room, cha-ching, cha-ching, and then most likely they’re going to be admitted to the hospital. So we’re talking about an extended, potentially extended stay in the hospital that could be avoided. Emergency room.

My daughter, she passes out when she gets dehydrated and had the flu and was visiting her uncle in Seattle. And he’s an emergency room doctor. So the first thing he does is he takes her to the emergency room. Her diagnosis after three hours of tests was dehydration. Her medical bills were $10,000. So it gives you an idea of what you can avoid.

speaker-0 (09:39.431)
jeez.

speaker-1 (09:45.07)
in terms of cost by preventing the need. So looking at how do you make sure that people are prepared for some of the symptoms that are gonna rise with certain conditions? So being prepared, having them have a plan in place, having somebody they can call. So we did this study, we published this in 2005 and here I am thinking,

Now circling around to your question, I was thinking everyone’s going to be doing this. Why would they not do it? It’s the right thing to do. People have better outcomes. People can save money. But the problem was, unless you’re a managed care organization like Kaiser, the people providing the care are not the same people that are saving money. So it was a disconnect on

who pays for it.

speaker-0 (10:45.518)
Cool. Okay. Sorry, got to remember, I’m a Canadian. So I’m in a different healthcare system than you are.

speaker-1 (10:55.97)
And you have incredible palliative care in Canada too.

speaker-0 (10:59.368)
Well, one of the other things is this morning I was driving back into my office and I heard on the news that the BC provincial government has put a hold on some expansion of senior care centers, which I’m going to look into a little bit more, but that’s a different story. But your comment about cost savings, regardless of which system, it’s still a cost. just who’s bearing the brunt of that cost.

speaker-1 (11:27.726)
100%. So it took a long time for this to start moving out and for people to replicate it. There were some really smart people that were working for some health plans that got on top of this right away. There was another researcher who found the exact same cost savings in a different health plan. So it reinforced our findings around the cost savings.

So we’re starting to finally see some movement into more mainstream population, but we still do not have a payment structure for home-based palliative care from our Medicare. So for the biggest payer of our aging population.

speaker-0 (12:19.468)
You said you have palliative care for people that are recovering versus not recovering. Is there a difference in approaches?

speaker-1 (12:29.736)
There really is not a difference in the approach. It’s really about bandwidth for the programs on what they’re able to provide. some programs, particularly home-based programs, will limit their services just because we don’t have enough of them, right? So they’ll limit them to the individuals with the biggest needs. So generally, people as they’re approaching end of life.

There’s also hospital-based palliative care. And there’s hospital palliative care teams that do consultations with patients. So when I have friends and colleagues that’ll say, oh, my brother-in-law’s in the hospital. He had a stroke. They don’t know what’s going on. The family doesn’t know what’s going on. And I always tell them, ask for a palliative care consult. Because that team will come in.

and sit with the family, review the medical records, and sit down and spend two hours talking to the family about what’s going on, trying to figure out what their goals of care are for their family member, and giving them information so that they’re able to make informed decisions. So the hospital-based programs, it depends a lot on supply and demand.

So they’re always going to prioritize people with the greatest needs. So it could be people that are imminently dying, haven’t had conversations with their families about what kind of care they want, who may not understand their disease and need more information. So those individuals are always going to take priority over people that are.

may need something temporarily and then are going to potentially recover from that disease.

speaker-0 (14:28.736)
Right, you had mentioned that you try and get to them earlier, like up to two years in advance of when they actually need it. How would you even determine that? Like, you know what I mean?

speaker-1 (14:41.656)
So yes, yes. So there are assessments and scales that people have developed that basically it goes off of somebody’s functioning, how well they’re able to function, how they’re able to take care of themselves or not, looking at diagnostic codes. So what are their diagnoses and other?

factors such as like are they if they have heart disease, are they oxygen dependent or if they have COPD similar things and those are kind of markers for severity.

speaker-0 (15:19.246)
Sorry, what’s COPD?

speaker-1 (15:21.525)
I’m sorry, chronic obstructive pulmonary disease.

speaker-0 (15:24.983)
Okay.

speaker-1 (15:27.63)
And so there’s, you know, there’s some conditions that cancers is much, much easier to prognosticate life expectancy than some of these disease like heart disease or pulmonary disease where somebody can have an acute episode and they, you know, they look really bad, but they kind of recover and they, do pretty well for another period of time. So those things are a little bit more difficult to prognosticate. that’s

kind of why we threw our net very widely so that we wouldn’t lose people by trying to narrow down to a specific six months or a very narrow window.

speaker-0 (16:08.878)
Does the way you care with somebody change depending on what their medical issue is? Taking aside the actual medical care, does the approaches for support of these people change?

speaker-1 (16:23.502)
You know, I think it’s one of the beauties of palliative care and even hospice care for that matter is that it’s very patient and family focused. So they look at the family and ask the family, are your priorities? What do you want to do? What do you want to accomplish? What are your goals here?

speaker-0 (16:44.558)
cookie cutter situation. It’s trying to make it, in essence, customized for each situation.

speaker-1 (16:50.51)
Yeah. So we had a woman in Hawaii, which was one of our early sites when we did our research. we went and read a lot of the charts after the end of the study. And there was a woman in Hawaii whose goals were to, she had to, what they would say, talk story. They had to tell their grandchildren family stories. And that’s really what she was holding on for.

And she taught it and that they were charting about this is their work well and she’s really hanging on so that she can do this. And then at the end of the of the period they said that you know they in the chart the nurse wrote that she had died with all of her children and grandchildren and dead with her and it went a beautiful you know pain free in her home. It was a beautiful ending and something that the whole family really wanted to have.

speaker-0 (17:49.994)
interesting. I’m starting to notice that a lot of the people that are older, quite older, tend to document their life to want to tell those stories. And I think it’s just their way of documenting exactly who they were when they’re gone type thing.

speaker-1 (18:09.24)
Yeah, making sense of their existence, making meaning and feeling like they had a meaning.

speaker-0 (18:17.846)
Yeah. So there’s either professional or family or combination of both with the palliative care. Is there different training approaches? I’m assuming with the professionals you’re going deeper.

speaker-1 (18:30.138)
Yeah, there’s a specialty licensure. they have to, for a specialty trained palliative care physician or nurse or social worker, they have to get extra training and pass a specific licensure exam to be the palliative care certified.

speaker-0 (18:53.07)
Okay. But you had also talked about family might all of a be worried about a specific machine starting to beep, that sort of stuff. So I would assume that when a family starts taking over some of the caregiving, you’re going to try and teach them as opposed to just say, if it beeps, don’t worry about it or something like that. You know what I mean?

speaker-1 (19:13.806)
Exactly. So it’s very different. Like if you’re in the hospital, you’re going to get that first thing. Don’t worry about it. That’s my job. Don’t worry about it. But you’re taking care of somebody at home that the palliative care team isn’t there that often. The person who’s there is a family member. So you have nurses and social workers and physicians coming in and out of the house. But the person providing care is still that family member or the caregiver. Usually they’re family members or informal

caregivers that aren’t specialty trained. So they are the ones that are providing that care for that person. And they’re the ones that are going to be seeing these symptoms and in feeling the stress of seeing their loved one in distress.

speaker-0 (20:00.76)
So that brings up another thing is that we always think in terms of the caregiver giving to the patient. What about the support of the caregiver itself?

speaker-1 (20:13.934)
So that’s another objective of the team. because the caregiver is really the linchpin, right? That holding the whole thing together. So it’s not just the patient in the center, it’s the patient and the family. So they’re looking at how do we support both the patient and the family and enabling this person to provide the care.

And even in hospice care, that’s the approach is really making sure that both the patient and the family members are well supported. And with hospice, after the individual passes away, they continue to provide bereavement support for those caregivers. So either through letters and cards or support groups or some type of therapy group.

So there’s all types of mechanisms that are employed to maintain the support even after the person has passed away. So maintaining that support of the family.

speaker-0 (21:17.534)
And support isn’t necessarily technical, it’s more emotional as well.

speaker-1 (21:22.966)
Right. Right. And a lot of times with our palliative care patients, we have patients that may not have really bad pain and symptoms or they’re being very well managed, but the things they really need support on are the emotional things or reconciling relationships that had been damaged in the past and trying to have closure before somebody passes away.

Oftentimes, they’re dealing with very complicated family dynamics and trying to work on situations that are not necessarily what we would think is the forefront of health care. So for example, we had a patient who was getting home-based palliative care. he was still undergoing aggressive cancer treatment. His oncologist was taking care of his pain and symptoms.

But he had a fear when he heard about palliative care. He was like, I don’t want any nurses coming here to nurse me because I can take care of myself. And he said that he found out that it was really about they were helping him with getting transportation to and from the doctor’s office, of getting his benefits set up, of making sure that he had support.

he wanted to take this trip and that he would get support that he needed to take this trip with his father. So a lot of it was heavy social work and care coordination and not as much of the, you know, what we would pain and symptom management.

speaker-0 (23:07.182)
It’s interesting you talk about the travel side of things and it harkens back to another interview I had with our guests from Road Scholar. And they provide discounts and specials for caregivers because they know that they need to get away and recover themselves. that’s from the home side. I have to believe

that the professionals, the ones that have to deal with this day in and day out, they also need a break. They also need that sort of support mechanism.

speaker-1 (23:44.514)
There’s, you know, it’s interesting because when you talk to the clinicians, I have a friend of mine was a hospice nurse for a long, long, long time. And she would say, I would just come home and I would sit over dinner and I would just tell these stories to my husband and my son. And she said, they finally did this intervention. They said, you can’t do this to us anymore because you’re trained to do this and handle it. But we are not.

And so, and she had no idea. She was just like sharing her day, but she had no idea that her processing was actually burdening her family. So for her, she said she had, she had a plant that she put on her porch. And when she got to her porch, she would just like dump her day into that plant and let it go. And, and, and then be able to be present for her family and not talk about work.

A lot of the hospice and palliative care teams will have team meetings where they recognize the patients they’ve lost. They may pray for those patients. They’ll go around and talk about them and what they learned from them. So they do have opportunities to process that loss. But then I also talk to a lot of people who feel that being able to do this is a gift. They feel like they benefit because

the families are so grateful to them that they’ve been able to come in and remove the pain that this person’s experienced or they came in and was able to get this person from the hospital back home. So they feel that there’s no other job they’d rather be doing. in fact, I have a friend who said that he hated hospital medicine so much that he was going to

quit and then somebody said, hey, why don’t you try hospice? And he said, to me, this is what medicine is, that you get to sit down and talk to your patients and find out what’s important to them. And then you get to help them achieve those goals. a lot of my colleagues and friends that work in this field find it very uplifting and rewarding.

speaker-0 (26:01.262)
It’s interesting. was just thinking how it’s almost like things have come full circle. When I was a kid back in the 60s, I still remember the family doctor coming to the home when I was sick, as opposed to me having to go to the doctor. Then everybody had to start going into the offices because it was more efficient. Great for the doctor, not necessarily great for the family. Now it’s again, you’re cut.

moving the healthcare back out to the family, to the home itself.

speaker-1 (26:34.798)
And when you think about it and think about somebody, know, somebody with advanced dementia, how difficult it is to get them up, get them dressed, get them, you know, into a car and, you know, you’re going from a wheelchair to a bed, to the wheelchair, a car, you know, and then backing it out at the doctor’s office. And it just doesn’t really make sense.

speaker-0 (27:00.59)
Like I said before, my father is 94. I want to say a month and a half, two months ago I helped him go to the hospital because he had to have eye surgeries to clear up his, what’s the fogginess of the eyes? I forget what that is.

speaker-1 (27:15.15)
Oh, oh my gosh.

speaker-0 (27:18.38)
Yeah, I want to say glaucoma, I’m That’s it. Cataracts.

speaker-1 (27:25.07)
There you go. Thank you.

speaker-0 (27:27.342)
Wow, memories going. Anyway, but I had to help him get there, stay until he was finished and take him back home. So that’s another form of the palliative care. But one of the things I noticed, and maybe it’s just my father, but he was always apologizing. Thank you, sorry for making you wait, that sort of stuff, because he’s been used to being on his own.

speaker-1 (27:54.424)
Mm hmm.

speaker-0 (27:57.026)
Yeah, yeah. With the things being from home now, a lot of technology that’s being made use of, I’m assuming.

speaker-1 (28:08.526)
I think we’re starting to see it more and more. It’s still, I would say, it’s still a little lagging in terms of home care. A lot of it with rural areas, some people don’t have internet, and so there’s not a lot of systems in place. Some of our older generations don’t know how to use the technology. So we do see people doing remote visits, taking pictures of things, sending them in.

having one of their, maybe if the nurse is out there and wants to show the doctor something, face timing, to show something that’s going on or demonstrating that. I think we’re going to start seeing a lot more of that with some of the new research that’s coming out in terms of how we could get better access, especially for our rural populations, to this type of care. Because when you think about

providing care to somebody that lives three or four hours away from a city, it’s just not feasible. It’s just not feasible to have a lot of visits. So you do have to rely on remote. Interestingly, we looked at a of our partners in California that were providing home-based palliative care. And when they said they were doing technology visits or more remote visits,

they were still talking about telephone, not FaceTime, like old fashioned calling on the phone and talking. So I think that a lot of it has to do with both ends, having the systems, the knowledge in place at the home, as well as having the technology base in each of these agencies that’s providing the care. But I expect too, as our population ages and we start seeing

the population that’s been like, when you talk about you and all the things that you do with technology and retired engineers and how they’re going to be able to do this, I think we’re going to see a lot more technology integrated into this. it helps, I think it helps with extending to the rural areas, but also increasing the frequency a little bit of those contacts. having, you know, so that so when you’re in person,

speaker-1 (30:35.566)
it takes a lot of time to get there. but whereas you can do a phone calls easier. So you can do more phone calls in between visits. And there was a lot of work that was done during COVID because around, you know, the more of the, the remote visits because people weren’t allowing people in their house or some agencies didn’t want their staff going into homes. So there was a lot.

on both ends and there was a lot of reliance on that technology. I think it showed that there was potential, but there was also still a lot of weaknesses. It’s really hard to evaluate where somebody is without being able to see them.

speaker-0 (31:20.94)
Right. That’s one of the things about Canada because it’s the second largest country in landmass, but we only have like 40 million people. We’re spread out. So we have a lot of telemedicine going on and that sort of thing. So that falls into where you’re talking.

speaker-1 (31:37.294)
Yeah. And I think we will start to see some more effort towards that remote care. Yeah.

speaker-0 (31:48.694)
What about the sandwich generation situation where you’ll have the parent needing that palliative care, but it’s usually the older adult children that have kids of their own. Is there any thought process with regards to that splitting of focus?

speaker-1 (32:11.5)
You know, I don’t know if there’s been anything in particular that’s been done for that generation more than anybody else. I don’t know that makes sense. But I don’t think that it’s, I mean, it’s recognized as a challenge, but I don’t think there’s added supports in terms of palliative care or things that are done differently.

speaker-0 (32:35.414)
Right, okay. When you introduced yourself, you said something that was really cool. You mentioned that you also teach a class on, what was it, ancient cultures approaches.

speaker-1 (32:48.544)
Ancient civilization, death and dying. Yes.

speaker-0 (32:51.202)
Tell me about that. That sounded interesting.

speaker-1 (32:53.614)
It’s really, really interesting. I take a group of students from USC, and we go to Italy for about two weeks. We travel around and look at everything dead, everything below ground. We see mummies. We go to catacombs. We go to cemeteries. We go to ancient burial sites. So we see

Utsi I don’t know if you’re familiar with Utsi. He’s the oldest wet mummy ever discovered. He was discovered in the Alps. And we’ve actually learned a lot about aging from him because we’ve learned a lot about some of the diseases that he had that we still have. and how you know, basically the aging and illness trajectories. So we go to see Utsi and we go to see the Etruscans, which is a civilization

that was indigenous to the Tuscan area in Italy. And they lived there from around 900 to 200 BCE. So it’s super interesting. We’d go and visit some tombs and a lot of museums that have their artifacts. But the most interesting thing about them is that

everything, almost everything we know about them came from their burial tombs, because they would bury everything you would need in the afterlife in with the individual.

speaker-0 (34:27.671)
Okay, any sense on.

how much has maintained through the centuries and millennia from those times to now.

speaker-1 (34:38.19)
Surprisingly, a lot. And a lot of different things that are still done by different cultures, right? So people, a lot of different cultures, believe that you need things for the afterlife. But we still have the same two main mechanisms that were used in early Roman and Etruscan era was cremation and intumation, so the body disposal.

those are the still the primary two mechanisms used to dispose the bodies. And, and most of them, especially, you know, even early Romans were all underground, whether it’s catagom or buried in a, in just in a plot or piece of land or in a mass burial hole.

speaker-0 (35:32.842)
Right. But that’s internment or dealing with the remains after death. Anything from before death, they’re taken care of.

speaker-1 (35:45.682)
that there’s

speaker-0 (35:46.574)
for ancient palliative care.

speaker-1 (35:48.846)
Yeah, the ancient palliative care. So there’s a lot around, like, the last, a lot of documentation about, the last days of life or when somebody’s actively dying or and how the ceremonies and the celebrate, you know, the honor the person and a lot of that is still the same too. But there’s not a lot of information from the Etruscan era about how they handle disease.

and caregiving. like, it’s like the one thing that they haven’t really talked about. And there wasn’t much documented at all. It’s a question, a really great question. Now it makes me wonder about if there’s anything during the Roman era, the early Roman era that any documentation on that.

speaker-0 (36:40.022)
One of the pillars we have is the global retirement perspectives. So what I’m trying to do is bring people in from different cultures because they’re going to have different ways of seeing things. Maybe it can be brought back in or into North America. So for example, I’m scheduled to meet with the Secretary General of the European Senior Union who leads the elder rights and elder activities in Europe.

But that’s very European focus. I’d also like to take a look at the Asia Pacific area, because they’re going to completely different cultures from North America, typically. So how does that flow in? Speaking of which, what about palliative care lessons have you pulled from other cultures for current activities?

speaker-1 (37:33.358)
So Europe is doing a really good job with palliative care. think the UK pretty much did a lot of the early work around palliative care. they’re leading those. I think we’re doing pretty good here. I Canada does really well. We’re seeing a lot of palliative care in Japan, starting to see a little bit in China.

But culturally, even hospice has been difficult in China to gain traction for because you don’t have death and dying. But palliative care, I think just because it’s the right thing to do, I think it’s done really well in other cultures and other societies.

speaker-0 (38:29.9)
Yeah, think it would be the reason why I’d really be interested in, for example, China, their culture is very family based, family oriented, whereas North America and Europe tend to be very individual based, for lack of a better term. So it’d be interesting to see how that works out.

speaker-1 (38:50.082)
I have a colleague who is from China. And her mother-in-law, she told me that her mother-in-law was put on hospice. And I asked her, said, well, does she understand? And she said, no, we didn’t tell her. She’s like, we just didn’t tell her, so we don’t talk about that. And I said, well, what about your husband? She goes, no, we didn’t tell him either. And she’s like,

But I know what it is and my son does too. So we’re good. Because it’s just not something even with her spouse, she didn’t feel like it was okay to have that conversation.

speaker-0 (39:32.686)
Different cultures, different approaches.

speaker-1 (39:34.176)
Yeah. So it was very interesting. So a lot of times, you know, I think the good thing about that story is it didn’t prevent them from getting the care. Whereas a lot of times these cultural beliefs and attitudes will prevent them from enrolling in palliative care or hospice care.

speaker-0 (39:57.472)
Is there cultural training or cultural sensitivity training that’s provided to the professionals?

speaker-1 (40:06.136)
There, I mean, I would say it’s available. A lot of health systems offer these things, but it’s not always focused specifically on giving bad news or referring people to these programs. I we have so many barriers to hospice care, even though it’s been around for much, much longer than palliative care.

I think we’ve surpassed 50 years of hospice. And so the enrollment in hospice has been growing and growing. think we’re about 52 % of Medicare beneficiaries, something like that. Medicare beneficiaries who die receive hospice care before they die. And then there’s some people that just aren’t going to be appropriate. People who die suddenly, of course, won’t have the opportunity. But we still see a lot of

ethnic and cultural variations and enrollment rates. So still the highest enrollment is still white individuals. So there are a lot of cultural barriers about, know, having these conversations, talking about death, talking about a program for people at end of life. So things that people don’t want to talk to their families about and don’t want to hear.

speaker-0 (41:30.104)
With the increasing aging of the population and quite honestly, the longevity extensions, do you see a lot more work starting to happen in palliative care?

speaker-1 (41:42.542)
Oh, yeah, definitely. mean, we are starting to see much more traction. A lot of the states have now gotten permission to include palliative care with their Medicaid, through Medicaid. So California, Hawaii, I know there’s others as those two that I’ve worked with and I’m more familiar with. But there’s definitely a movement to do that. We’re still working on

Medicare, trying to get a Medicare reimbursement for a home-based palliative care program. hospital-based palliative care is pretty much provided by hospitals without, it doesn’t matter what your insurance is because it’s in the best interest of the hospital. And then you can get outpatient palliative care too, which is billed as a doctor’s visit. It’s not going to be the big interdisciplinary team. It’s most likely going to be

a physician or maybe a nurse practitioner that would be providing, you know, like an outpatient office visit. So, very different than the team.

speaker-0 (42:49.74)
Okay, so home-based is team approach. Outpatient is a single doctor or nurse.

speaker-1 (42:56.64)
And generally when you have an outpatient visit, there are also a few programs that provide like a clinic team. So let’s say in a cancer oncology clinic, there may be a palliative care team that has a doctor, nurse, and a social worker, maybe a chaplain. But it’s not our standard of care.

speaker-0 (43:19.598)
Okay, palliative nurse, more checking on the medical side of things, I’m assuming. Practical nurse, for the taking care of everything around the body. Again, if I’m wrong, please correct me. And the doctor, the family, were there other specialties that get involved in this team approach?

speaker-1 (43:49.162)
Well, they have, it really depends on the payment structure and what they’re able to do. So a lot of times the things that they lose are the social worker, the chaplain. It’s the US billing system. It really is.

speaker-0 (44:07.79)
Again, that’s, I want to be clear that I’m thinking in terms of the services that are required, not who’s paying for it. So you’ve talked about the spiritual side of things. You’ve talked about the administrative side of things with the social worker, that sort of thing. So are there other…

services that are needed for the palliative care.

speaker-1 (44:39.16)
So it needed or required, because those are two different things, right? Perfect. Perfect. So required, there’s nothing required for palliative care unless it’s required by a certain payer. see how the payment aligns with what? there’s no, like, hospice has a standard of care because Medicare pays for it. Right. So you are required to provide certain things.

speaker-0 (45:01.71)
So there is no standard for palliative?

speaker-1 (45:04.158)
is no technically there is no standard of care. So we always say if you’ve seen one palliative care program, you’ve seen one palliative care program. So the because we I mean, so not having a benefit really, really does not help the service, because we don’t have we don’t see requirements.

So we were working a few years ago, we were working with a number of different home-based palliative care programs in California. And more than half did not have a chaplain.

speaker-0 (45:42.432)
Interesting.

speaker-1 (45:43.32)
Some didn’t have a social worker. that variation, mean, because there’s no requirement, it was like, we’re not going to spend the money. We don’t have enough patients to bring in another person. Or whatever the issue is, there was no requirement. if a payer, so let’s say a Blue Cross insurance company,

said, I want you to provide this care for all of my patients. And here’s the requirements. They could do that, and they could require that. But there’s not one big payer across the country that can really lead the field right now.

speaker-0 (46:23.32)
There’s no, and I’m blanking on the name from the federal government, but here Ministry of Health. There’s no standard that has to be met federally.

speaker-1 (46:29.582)
Get away.

speaker-1 (46:36.514)
There is not. Yeah, which is an unfortunate side effect of

speaker-0 (46:44.664)
Is anybody working on that?

speaker-1 (46:46.658)
Yes, there’s a lot of very, very smart people out there, some incredible policy people that have been really working hard to get this moved. And organizations that their specific core aim is to move palliative care into the upstream to broad systems and programs.

speaker-0 (47:14.392)
That goes to, right at the beginning you were talking about end of life and quality of life. The quality of life then becomes dependent on whoever the service provider is.

speaker-1 (47:27.498)
Right, right. So if you think about, you you can’t, you don’t really want to take your service provider because they provide better care for people who are dying, right? Because most people don’t get it that way, They’re going to look at who’s going to save me because that’s what I would do. I’d do the same thing. Who has the best physicians and maybe they don’t have good bedside banners, but I don’t really need that right now. Right. So everyone’s going to focus on

that identifying the people that are maybe can be more aggressive rather than people who are going to be able to link them into these programs.

speaker-0 (48:03.924)
Interesting, interesting, very interesting conversation. I’m glad we’ve had this. Okay, I always finish off my interviews by asking this same question of everybody, If you were to give one piece of advice to everybody, what would it be?

speaker-1 (48:22.604)
So I, and I, I’ll bet you anything that you’ve heard this before. Plan ahead. Has everybody, has everybody said that? No.

speaker-0 (48:32.302)
Different people have different things. I have heard that one, but not every. It’s like it’s been a variety because it depends on what area people are in.

speaker-1 (48:42.318)
Yeah, so plan, you know, plan for the worst. Talk to your family about the kind of care you want and what you would what would be a quality of life for you. You know, you can fill out an advanced directive. But the big thing is, I mean, the most important thing is having the conversations, talking to people. If you’re watching a movie and you’re with people that you love and you see somebody in a horrible physical state and tell them I would never want to live like that.

So I’d say you have these conversations early, make sure they understand where your values are. I mean, my poor kids, they’ve heard this for the last few years. they’re like, yeah, mom, I know what you want. But that makes it, I mean, I think it takes the fear out of it because it normalizes the conversation. I think my father-in-law had the conversation with me because he knew what I did maybe 20 times.

in like a 12 year span. mean, because, you know, he’s like, yeah, I got you, I got you. but I think that having those conversations, don’t wait until you’re sick. It’s easier to have them when you’re not sick.

speaker-0 (49:54.85)
Absolutely, absolutely. Well, Susan, thank you very much for taking the time for this interview. I really appreciate it. I think it’s an important conversation that I don’t think we have enough. So thank you very much.

speaker-1 (50:10.414)
Well, thank you for having me. really appreciate it. And I appreciate you sharing this information with your viewers.

speaker-0 (50:17.88)
There we go. for everybody that’s watching this video, I will put links to Susan and her group within USC in the description of the video itself so that you can find her and go reach out if you have questions or help. There might be some volunteer organizations that need help for this side of things as well. I remember my mother, when she was still alive, gave that type of assistance to hospice. So I’m sure there are organizations that provide that as well.

Anyway, Susan, thank you very much.

speaker-1 (50:50.446)
Thank you Neil. Bye bye.

speaker-0 (50:52.313)
Bye bye.