In this week’s episode, Cara is joined by Pamela Roman, MSN-Ed, BSN, RN to explore the urgent need for pediatric hospice and respite care options beyond hospital walls. Together, they shine a light on how limited choices force many families into stressful acute care settings, and why specialized facilities can make a world of difference. The conversation dives into the unique communication skills nurses develop when working with children, and how these skills ripple out to improve care for everyone. Listeners will hear about the challenges of designing care homes that truly fit each community, as well as the uphill battle for funding and policy support. The episode also highlights why in-home respite often falls short, and how dedicated centers staffed by trusted professionals can offer families the rest and support they desperately need.
About the Guest
With over 35 years of nursing experience, Pamela Roman, MSN-Ed, RN has dedicated her career to providing compassionate, skilled care for both adults and children across a wide range of settings from acute care to end-of-life support. Her deep commitment to patient well-being and her broad clinical expertise have made her a trusted caregiver and advocate throughout every stage of life.
Key Takeaways
- 00:06:39 - There is a significant lack of pediatric hospice and respite care options, especially outside of hospital settings, leading many children to spend their final days in acute care environments that are not ideal for families or patients.
- 00:11:01 - Working with pediatric patients enhances nurses’ communication skills, as it requires adapting approaches to different developmental stages, which can also improve care for adult patients.
- 00:15:17 - Designing pediatric respite and palliative care homes must be tailored to the specific needs of each community, considering factors like bed count, acuity levels, and staffing requirements to best serve local families.
- 00:21:28 - The biggest challenge to establishing pediatric respite and palliative care homes is funding and reimbursement, as current policies and licensure categories do not adequately support these facilities, forcing many to rely on donations and nonprofit fundraising.
- 00:27:03 - In-home respite services are often insufficient for families, as parents struggle to truly rest while their child is present; dedicated facilities with trusted, skilled staff would allow caregivers meaningful breaks and better support family well-being.
- 00:34:04 - Listeners are encouraged to get involved by learning more through resources like the National Center for Pediatric Palliative Care Homes and advocating for policy changes to improve funding and access to these essential services for all families, not just those with financial means.
Episode Transcript
Cara Lunsford, RN (00:09.038)
So hi, hi, hi, officially. Hi, Pam Roman. I'm good. So do you go by Pam or Pamela?
Pamela Roman (00:13.757)
Hi. Kara, how are you?
Pamela Roman (00:20.221)
Pam is fine. Either way. But Pam is good. Pam is good.
Cara Lunsford, RN (00:23.01)
Well, what do your friends call you? Okay, I'll call you Pam. All right. Well, this is gonna be a great interview because I'm super passionate about this area for sure. I don't know how much you know about my...
Pamela Roman (00:28.559)
Okay, perfect.
Cara Lunsford, RN (00:48.16)
experience or history, but I worked in pediatric oncology at Children's Hospital for many years and at CHLA. so this is yeah, thank you. And so I'm really passionate about the concept of pediatric palliative care, hospice, respite centers. All of that is is just an area that I have a lot of passion.
Pamela Roman (00:58.834)
Wonder.
Cara Lunsford, RN (01:18.158)
So I have not done an interview about any of this in the past and we're in our season six actually. And so that's why I'm really happy to have you here, Pamela.
Pamela Roman (01:35.057)
Thank you. Thank you. It's I would say you don't meet maybe a ton of people that are passionate about this specialty, for various reasons, I think.
Cara Lunsford, RN (01:50.486)
It's a hard one. yeah, so I found that a lot of people kind of, for fear, probably from fear, want to kind of put their head in the sand a little bit and be like, this is not a thing. Children are not suffering in this way. Families are not suffering in this way. Just because it's a hard thing to have to think about.
Pamela Roman (01:51.773)
That's it. Yeah.
Cara Lunsford, RN (02:20.416)
and to consider and also to know, well, what can I do to make a difference or how can I move the needle in this area? So Pam, I would love to get a little bit of background on you. Just what's your experience in healthcare? And then like, how did you get into this area of focus?
Pamela Roman (02:22.141)
Mm-hmm.
Pamela Roman (02:44.349)
All right, so my nursing journey started in 1990, hard to believe 35 years later. I started as an LPN, went to LPN school in Florida. Just to get my feet wet, kinda did I have what it took to be an RN, that's honest.
from me and loved nursing. Served as an LPN for 13 years. I will tell you honestly that during LPN school I had said, I'm not doing PEDs. No way, no how, not happening, right? And one of the reasons for that was my first pediatric clinical rotation.
that we as nursing students are required to do, right, to learn the clinical aspect of care. I took care of a shaken baby. So with that experience, I thought I can do this. So anyway, moving forward, I did end up working for a pediatrician, two pediatricians that focused on children with special healthcare needs and then did med search for adults.
kept moving forward. When we moved to Arizona, responded to a job posting for a hospice here in the Phoenix area and took that position. So started working inpatient hospice, which if you ask me in my career, what I love most is that care.
And then it's evolved into having children in our inpatient units and caring for children. And initially thinking, don't know if I can do this, right? Turning into, I wanted to do it because I realized quickly that children should have the same benefit as adults when it comes to hospice palliative care, end of life care.
Pamela Roman (05:11.645)
And so always welcomed taking care of a pediatric patient and their family. Went back, got my RN, continued into hospice and palliative care for, of my 35 years, 25 years have been dedicated to that specialty. And so then years down the road was asked to lead a pediatric palliative care.
facility in the Phoenix area and was honored to do that, learned so much from children and their families and leading those teams. And today I'm sitting in higher education. So sharing the wealth of knowledge with hospice, palliative care, what does it look like in the post-acute settings for nurses.
understanding that everything's not just hospital-based. There's a whole world beyond the hospital. And it's always really great to find students who have a passion for hospice and palliative care.
Cara Lunsford, RN (06:25.382)
beautiful. You have such a long career and so much experience and you know hats off to you. There's not many people who have gone from I'm not doing PEDs because I've heard that from a lot of adult nurses who are like mm-hmm nope not doing the PEDs thing and as opposed to pediatric nurses well they'll do both right?
Pamela Roman (06:45.245)
Mm-hmm.
Cara Lunsford, RN (06:52.65)
If you can do pedes, you're like, I can do adults. They're just kind of big children. Sometimes they're just big kids. So I think that that's kind of amazing just in and of itself that you realized, hey, know, kids need this as much as our adult population.
Pamela Roman (06:57.841)
Yeah, yeah, sometimes. Yeah.
Cara Lunsford, RN (07:20.722)
and that they deserve, especially if they're in, have a life-limiting disease and their parents, their caretakers need respite, they need that assistance. And then when it comes time for transition, the need to transition, having that kind of support.
Pamela Roman (07:44.605)
Mm-hmm.
Cara Lunsford, RN (07:49.494)
outside of the hospital because so many times kids, they don't have any other choice, right? Or they either die at home or, and there's not many hospices that will even take kids. So there's not many pediatric hospices out there, even for home care. At least here in California, we have one to speak of, Trinity.
Pamela Roman (07:59.709)
Mm-hmm.
Pamela Roman (08:17.159)
Mm-hmm.
Cara Lunsford, RN (08:19.842)
But then it's like, well then they have to kind of pass and transition in the hospital, which is not ideal either because you're trying to cram all these people into an acute care setting. You want all the family members to be there and to be able to say their goodbyes and to be with this loved one. And it's, I think the families feel well supported by their.
Pamela Roman (08:26.397)
Mm-hmm.
Pamela Roman (08:39.335)
Mm-hmm.
Cara Lunsford, RN (08:48.108)
by the nurses and the physicians and everything, but it's not the ideal place. So I really love that you are teaching this next generation of nurses that there is more to nursing than just acute care. I think so many nurses come out of nursing school and they think the place to be a real nurse is in the hospital.
Pamela Roman (08:49.668)
Mm-hmm.
Pamela Roman (09:08.285)
Mm-hmm.
Pamela Roman (09:12.967)
Mm-hmm. Yes.
Cara Lunsford, RN (09:14.636)
Like that's where you go to become a real nurse. And yes, you get a lot of experience there, but there's so much need in the post-acute area.
Pamela Roman (09:23.889)
Mm-hmm. Mm-hmm. Absolutely.
Cara Lunsford, RN (09:30.498)
What has been the response from your students as you talk to them about this, as you tell them about this world that's available to them? What has been some of the response you've gotten?
Pamela Roman (09:41.565)
Mm.
Pamela Roman (09:46.641)
So this is interesting. One of my former students actually works in a pediatric palliative care facility here in Phoenix, right? She was interested early on in school, talked to me a lot about it, those sorts of things. So to have one land in that specialty is great.
as far as I'm concerned, right? So you have ones that are curious about it, want to hear more about it, go out and do their own research. You have others that don't want to do PEDs, can't think about pediatric hospice, pediatric palliative care, right? Because they just can't get past.
they want to do ICU or they want to do the ED or they want to do X, Y or Z, right? But really encouraging them to be able to explore things that you don't think you're interested in because you never know, right? What's going to come your way. And one of the things I think is really important for students, nurses in general is to widen the
Cara Lunsford, RN (10:46.19)
Mm-hmm.
Cara Lunsford, RN (11:00.515)
Yep.
Pamela Roman (11:10.885)
lens right be able to care for children and adults it's kind of a golden ticket if you will you can do anything so I encourage them just to look and explore and don't turn away from it because you never know what you might learn if you put your toe in the water yeah
Cara Lunsford, RN (11:28.803)
Yeah.
I think I became a better adult nurse because of my experience with children. Because with kids, and this is what I would say to nurses, whether they're new nurses or even more senior nurses that haven't maybe explored other areas, is that by working with children, it's not a one size fits all.
Pamela Roman (11:35.773)
Mm-hmm.
Pamela Roman (11:39.867)
Yes.
Cara Lunsford, RN (12:01.004)
Not that it is with adults, but you have to really consider where that child is, right? Developmentally. The way I talk to a two-year-old is not the same way that I talk to a six-year-old or a 10-year-old or a 15-year-old. And I think that it helps us hone our communication skills better to be more nimble.
Pamela Roman (12:08.637)
Mm-hmm. Mm-hmm.
Pamela Roman (12:17.905)
Mm-hmm.
Pamela Roman (12:26.875)
Mm-hmm.
Mm-hmm.
Cara Lunsford, RN (12:30.094)
and dynamic in the way we communicate with people because sometimes we assume that adults developmentally are at a certain place, but sometimes they're not. And when you work with children, you have that ability to say, you know what, I think that this adult could really benefit from maybe this approach or this other approach.
Pamela Roman (12:33.585)
Mm-hmm.
Mm-hmm.
Pamela Roman (12:42.173)
Mm.
Mm-hmm.
Pamela Roman (12:51.015)
Mm-hmm.
Pamela Roman (12:56.957)
Mm-hmm.
Cara Lunsford, RN (13:00.012)
And so I just feel like I've become a better adult nurse having been a pediatric nurse. Do you feel like you've had that experience as well or something similar?
Pamela Roman (13:05.681)
Mm-hmm.
Pamela Roman (13:12.517)
So I agree with that because I've said many times when you talk about therapeutic communication, right, which we teach to our students, our nursing students, for me, I always thought, I'm a good communicator. In the adult environment, adult hospice care, I didn't understand what that truly meant until I did pediatric hospice and palliative care.
It totally, I mean, changes the lens completely, right, on how you talk to people, how you approach them, really paying attention to body language, when to back off, when to lean in, what does it mean to lean in. I tell my students often, lean into those complex situations that challenge you. I said, those are the ones you're gonna learn from.
Cara Lunsford, RN (13:55.874)
Hmm.
Pamela Roman (14:12.573)
And I think honestly looking back I can say that's what turned the needle for me or advanced the needle I should say to be able to have those conversations with folks.
Cara Lunsford, RN (14:28.44)
Yeah, I can't agree more. It's been the same type of experience for me and improving my communication, which is, that's nursing, right? Anybody can give a pill. Anyone can learn how to put in a Foley or drop an NG tube. You can learn those skills, right? Those are things that are taught and learned.
Pamela Roman (14:30.141)
Yeah.
Pamela Roman (14:40.967)
Mm-hmm. Mm-hmm.
Pamela Roman (14:45.681)
Mm-hmm.
Pamela Roman (14:52.049)
Yes.
Cara Lunsford, RN (14:58.206)
And I've even had parents, you know, learn how to do all of those things. They're not a nurse, but they probably could be. But the communication, the empathy, the compassion, the being able to hold space for people, sit in those uncomfortable situations, that's what makes nurses special. It's what, you know, you're not a doctor, you're not a family member, you're not a pastor.
Pamela Roman (15:00.434)
Thank
Mm-hmm.
Mm-hmm.
Pamela Roman (15:14.49)
Mm-hmm.
Pamela Roman (15:20.669)
Mm-hmm.
Cara Lunsford, RN (15:28.162)
You're not, you you have this very unique set of skills and communication is, I think, totally one of those really important skills. I heard that you, are you trying to stand up a, one of these respite, like,
Pamela Roman (15:28.401)
Mm-hmm.
Pamela Roman (15:41.319)
Absolutely.
Cara Lunsford, RN (15:55.374)
pediatric respite centers or are you helping people to set up these like pediatric and palliative care? Okay.
Pamela Roman (16:04.059)
So I sit on the board with an initiative to move houses forward and really looking at communities and what the need is in the community. So not every community is going to not be like Phoenix, right? Each community is going to have their own population, their own need.
And how do you design those homes, if you will, that meet the need of the community? So from a standpoint of how many beds do you need, right? What kind of care are you going to provide? High acuity, lower acuity, those sorts of things. How many nurses do you need? How many aid? Those sorts of things that you look at when you look at
different homes to provide respite and palliative care to children.
Cara Lunsford, RN (17:10.018)
Yeah, and what about in Los Angeles, for example, or any of the areas that have kind of prominent children's hospitals, for example, you know, whether you're thinking about Children's Hospital of Philadelphia, or you're thinking about Children's Hospital of Los Angeles or Children's Hospital of Orange County. What's the current landscape here?
Pamela Roman (17:19.441)
Mm-hmm. Mm-hmm.
Pamela Roman (17:27.387)
Mm-hmm.
Pamela Roman (17:33.02)
Right.
Cara Lunsford, RN (17:39.31)
in California.
Pamela Roman (17:42.557)
I do know in California they have George Mark, right, that provides hospice, palliative care, respite. If I'm correct, George Mark was the first in the country and then moving on from there was Ryan House here in Phoenix. So as far as hospitals are concerned, I
I don't have a good pulse on what that looks like for children's hospitals. Again, you talked about earlier hospitals and children in hospitals and oftentimes too the stress that comes with just being in the hospital and how do we make that look different? Not only for children but for their parents alike. So things of
you know, maybe not wearing scrubs, maybe wearing more fun t-shirts with scrub pants so they're not so scary. Everybody doesn't look like a nurse or a doctor, those kinds of things. Homes that have sensory rooms or therapy pools, because we know many of our kids that aren't ambulatory love the water, right? They can do things in the water that they can't do outside of.
So giving them the tools to do those things and enjoy life a little bit differently.
Cara Lunsford, RN (19:17.794)
Yeah, yeah. I've thought about when it comes to, like let's say that you're a nurse and you're listening to this podcast and you say, this is what I wanna do. I want to stand up a brick and mortar house near me. I know that there's a tremendous need. I work in pediatrics.
Pamela Roman (19:37.573)
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (19:46.35)
at a local hospital, I know that the community needs this. And how do they go about that process if they want to do this? Because I know that there's some policy that's being worked on because there's a licensing issue. It's a little no man's land right now because
Pamela Roman (19:53.127)
Mm-hmm.
Pamela Roman (20:04.913)
Mm-hmm. Mm-hmm.
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (20:15.638)
It's like you're not a skilled nursing facility. You're not a home health. You're not like, you know, so if you want to be able to bill and get reimbursement, you have to be licensed as something. So what, how can, how can people get involved? Like what can they do to help move this needle even further?
Pamela Roman (20:20.582)
Mm-hmm.
Pamela Roman (20:29.671)
Mm-hmm. Mm-hmm. Mm-hmm.
Pamela Roman (20:42.365)
I think what you find is there are more and more in the US, right, is seeking those folks out that are either maybe they have something already established or they're looking to build
and being able to reach out to those folks who are in the community. It may be coming alongside pediatric hospitals or hospice organizations or palliative care teams to move that forward for children, especially with identification of the need. We know from just the landscape of healthcare, we're able to
For example, children born at 23 weeks, chest ation, right? We hope those kids do really well and come out of the NICU, right? And do great, but we also know that there are gonna be times where that's not always great. And then we're gonna have children with different healthcare needs, maybe some long-term effects from being born at 23 weeks.
And so how do we support those parents as they navigate this new journey? And really having folks that are established to help people with insurance navigation, early intervention, those different things that come into play when you have children with different needs.
Cara Lunsford, RN (22:26.86)
Yeah. What do you find is the biggest challenge right now that...
people are facing in wanting to have these types of houses in their community. What do you feel like is the biggest thing that the hurdle, the biggest hurdle that they're facing?
Pamela Roman (22:55.837)
Honestly, I would say funding, right? So reimbursement, looking at licensures, looking at different initiatives that provide reimbursement for children seeking respite or palliative care. We know there's a hospice benefit, right, for kids, so there is that available. But children who need, well, let me back up.
Parents who really want to keep their children home and continue to take care of them, recognizing that these parents, guardians, need break time, right, to restore themselves, to be able to continue to provide that high level of care. Because we understand children that are, you know, trained, vented, TPN maybe, G tubes.
is a high acuity level of care that requires 24-7 monitoring, right? And so we know parents have to work and provide for their families. Many times these children are not the only child in the family. And so supporting the family as a unit by giving them time.
Cara Lunsford, RN (24:01.944)
Mm-hmm. Yep.
Pamela Roman (24:18.909)
to do things together while also your child is well taken care of and having some different experiences as well.
Cara Lunsford, RN (24:26.85)
Yeah, and I think that that's such a good point, right? And it's some good insight into.
what we need to do from a policy perspective to help make sure that these services are reimbursed because you always have to follow the money, right? It's unfortunate that that's the case, but that's what it is. And if you don't have money, if there's not money to
Pamela Roman (24:47.037)
Mm-hmm. Right.
Pamela Roman (24:52.699)
Yes.
Pamela Roman (25:02.279)
Mm-hmm.
Cara Lunsford, RN (25:06.606)
pay for the employees or to cover the overhead to provide all of those incredible services. There's just not gonna be, it's not gonna work, right? And it's, yes, we can rely on the kindness of community to donate and if you're a nonprofit to, but that's a lot of work.
Pamela Roman (25:08.754)
me.
Mm-hmm.
Pamela Roman (25:16.849)
Mm-hmm.
Pamela Roman (25:23.559)
Mm-hmm. Mm-hmm.
Pamela Roman (25:32.733)
Mm-hmm.
Cara Lunsford, RN (25:36.672)
Okay, to like constantly raise money to support this type of effort. It's a full time job. Anyone who's ever worked for a nonprofit knows that this is a full time job just to raise money. And that's not where they should be putting their time and their energy. They should be putting it into the families and the kids and the caretakers and the support staff and
Pamela Roman (25:36.839)
Mm-hmm.
Pamela Roman (25:41.082)
Mm-hmm.
Mm-hmm.
Pamela Roman (25:49.051)
Yes. Yeah. It is. Yes. Mm-hmm.
Pamela Roman (25:58.119)
Mm-hmm.
Pamela Roman (26:01.681)
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (26:05.848)
the services, that's where that time and energy should be going. So we have to change the policies, right? Like, so I would say anyone who's listening to this, who, you know, talk to your representatives, talk to, you know, send letters, write letters and say, hey, why is this not being funded? You know, why is there not a license for these facilities so that they can...
Pamela Roman (26:07.175)
Mm-hmm.
Pamela Roman (26:11.537)
Mm-hmm. Yes.
Pamela Roman (26:19.067)
Mm-hmm. Mm-hmm.
Pamela Roman (26:27.665)
Mm-hmm.
Pamela Roman (26:32.091)
Mm-hmm.
Cara Lunsford, RN (26:32.79)
seek funding and they don't have to rely on donations constantly, right?
Pamela Roman (26:38.075)
Right. Yes. Yes. I think, you know, not being shy about it, right? You can walk through any hospital that has a NICU, a pediatric intensive care unit, and an oncology unit, and see, you know, the kids and families that need it, right? It's not, you know, like they're in hiding.
these folks are out there, right, and need the support and care just like on the adult side when you have adults that have respite benefits and different things that allow them to have those different services. Again, right, kids deserve the same thing.
Cara Lunsford, RN (27:27.81)
Yeah, and I know some people might say, well, I've heard that families, you know, can seek respite within the home and maybe they can get a few hours a week or something like that where someone comes into the home. I will tell you as a mother and as someone who has worked in home health, who has worked in hospice, who has seen, you know, even when I...
Pamela Roman (27:47.036)
Hmm.
Cara Lunsford, RN (27:57.186)
would go in and be with a patient for an hour or so. Sometimes I would say to the parent, hey, you know what, I'm here, I'm here to draw labs, I'm here to administer some medication, go and like take a break. Just go take a shower, take a bath, do something for yourself. It is so hard for those parents to take a break.
Pamela Roman (28:02.813)
Mm-hmm.
Pamela Roman (28:13.969)
Mm-hmm. Mm-hmm. Mm-hmm. Mm-hmm.
Cara Lunsford, RN (28:26.114)
when they are in the home with their child. Like it's next to impossible, right? Very tough. Now, if that child were to go to a facility for a couple of hours and they had this level of trust, they knew that there was really well-qualified people, skilled nurses, therapists, all of this, then...
Pamela Roman (28:26.525)
Yes. Yes.
Mm-hmm. Mm-hmm.
Pamela Roman (28:41.082)
Mm-hmm.
Pamela Roman (28:44.701)
Mm-hmm.
Pamela Roman (28:51.175)
Yes.
Cara Lunsford, RN (28:53.922)
Maybe they could feel like they could be at home for a couple of hours and clean their house and take a shower and take a bath and, I don't know, read a book. Or take a nap, imagine that, right? But it's gonna be really hard to do that when you're in the home with your child. So I think that that's another reason why this is so incredibly important and we can't just say, well, know, a couple hours a week.
Pamela Roman (28:56.124)
Mm-hmm.
Pamela Roman (29:02.757)
Yeah, or take a nap. Right? Yeah. Yeah.
Pamela Roman (29:13.511)
Mm-hmm. Mm-hmm. Yes.
Cara Lunsford, RN (29:22.67)
Medi-Cal might pay for an LVN or someone to come in for a couple hours. I've also seen that there is a tremendous difficulty even getting that because the pay is pitiful.
Pamela Roman (29:22.674)
Mm-hmm.
Pamela Roman (29:26.109)
Mm-hmm.
Pamela Roman (29:31.452)
Okay.
Pamela Roman (29:40.317)
Mm-hmm. Mm-hmm. Yes. Mm-hmm.
Cara Lunsford, RN (29:45.698)
Have you found that too, that just even when you talk about reimbursement, the pay.
Pamela Roman (29:50.641)
Yes. Yes. And I think that's why there are...
home health companies too that may struggle, right? Because of the amount of reimbursement. So we know that kids that require higher level of care are the ones that are reimbursed heavier. Yeah, I understand that to a degree. But then I think about, let's look big picture. What happens to a family when...
Mom or dad gets sick, right? And they're hospitalized or another one of their children gets sick and things start to unravel. Where's the support then, right? And supporting them in a way where we can really hopefully restore their health, not only physically, but mentally, right?
so they can return to their home. And just the amount of worry about where's my child, who's taking care of them, are they taking care of them properly, all of those things that really factor in that we have to be able to look at as well.
Cara Lunsford, RN (31:15.179)
Yes. You know, personal story, and I've probably said this before on this podcast, is that one of the things that really burned me out in nursing was we took care of a kid on our floor who was not an oncology kid. He was an epidermolysis below the child. And I don't know how familiar with its connective tissue. Basically, they look like a burn, like a
Pamela Roman (31:20.231)
Mm-hmm.
Pamela Roman (31:29.447)
Bye.
Pamela Roman (31:37.903)
Hmm.
Yeah. Right? Mm-hmm.
Cara Lunsford, RN (31:45.154)
you know, third degree, fourth degree burn patient, right? All over. And you know, their skin is just coming off, you know, the slightest amount of friction. And they have to have baths, they are high risk for infection. They have to have their wounds consistently wrapped and rewrapped. And...
Pamela Roman (31:48.145)
Mm-hmm.
Mm-hmm.
Pamela Roman (31:54.941)
Yes
Pamela Roman (32:08.465)
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (32:14.226)
This child in particular got to a point where he was, you know, older. He was like 12, 11, 12. And his father threw out his back, picking him up and putting him into a bath, a bath that he was doing every other day. And his mother was doing for him every other day. And eventually he ended up in the hospital. But really, could that have been prevented?
Pamela Roman (32:20.893)
Mm-hmm.
Pamela Roman (32:25.627)
Yeah.
Mm-hmm.
Yes.
Pamela Roman (32:37.073)
Mm-hmm.
Pamela Roman (32:40.689)
Mm-hmm.
Cara Lunsford, RN (32:44.238)
Probably, probably. It could have been prevented if there was a place where that family could have gone to get some of that help, maybe a couple times a week or something like that, where they're not the only ones doing it. We have to be better. We just need to be better as a society at recognizing and seeing what people are going through.
Pamela Roman (32:57.821)
Yes.
Mm-hmm.
Yes. And I think that's a great point and a great story with the demonstration of what can happen, right? And then what happens to someone who, a parent that, you know, throws their back out or gets sick, where does the child go? So does the child go into a hospital? And we know the risk. Every time one of
these kids, anybody really goes into a hospital setting, right? The risk for infection, the risk for something happening that doesn't need to happen, right? And just, you know, adding insult to injury, if you will, when we could really have places that are very in tune to children with these different healthcare needs.
Cara Lunsford, RN (33:47.074)
Right?
Pamela Roman (34:06.117)
I think about England as a country and the start there with Helen House and how those homes just grew. And so they have those resources available. And why should we be different? Because we have kids with huge needs here and families with the needs. And so why should it be different in America? So it shouldn't be. Not at all.
Cara Lunsford, RN (34:31.158)
It shouldn't be. It shouldn't be. We're one of the wealthiest nations in the world with the most access and the most qualified and skilled people. we, like I said, we have to do better. We just have to do better. And I feel like the call to action here.
Pamela Roman (34:47.879)
Mm-hmm.
Pamela Roman (34:54.161)
We have to do better. Yes. Yeah.
Cara Lunsford, RN (35:01.006)
for the listeners, if this is something that you didn't realize was happening, if you didn't realize that these services were not available, that there was this huge gap, that get involved, get involved. Where can you point people? So if you wanna point people to a few different areas,
Pamela Roman (35:02.865)
Mm-hmm.
Pamela Roman (35:14.097)
Mm-hmm.
Pamela Roman (35:18.78)
Yes, yeah.
Pamela Roman (35:27.719)
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (35:29.91)
where do you want to point people to?
Pamela Roman (35:33.085)
So if people want to look at, let me, I don't want to misspeak.
Cara Lunsford, RN (35:43.982)
That's okay. That's okay. You've got time. put you I I put you I put the pressure on you to deliver but and and here's the thing while Pam's looking for the places that you can go We we always try to make sure that the resources and the things that are mentioned in the podcast we do our best to
Pamela Roman (35:53.243)
Yeah, let me look.
Cara Lunsford, RN (36:12.17)
make sure that they're available, either in the episode notes, on the podcast landing page. So we have a nurse.com forward slash podcast that people can go to, search the episode that you're looking for. And then we put links to those things. So what Pam's about to share with us, we'll make sure that if you're in the car, don't risk your life or anyone else's by trying to jot this down. You can always re-listen to it later or visit.
Pamela Roman (36:14.383)
Mm-hmm. Mm-hmm.
Pamela Roman (36:24.007)
Mm-hmm.
Pamela Roman (36:38.301)
Mm-hmm.
Cara Lunsford, RN (36:41.791)
the landing page. All right, Pam, shoot.
Pamela Roman (36:44.527)
Yeah, I will share. So National Center for Pediatric Palliative Care Homes is a great website to really look at and read and understand what the issues are. There's also information that comes out where laws may be changing in certain communities, the progression of homes being established for kids.
kind of where does that stand? It gives you the opportunity. I think he would be fine me throwing his name out. Jonathan Cotter, who is very passionate about this cause because of his own personal experience, is a great voice for families and children, right? A great advocate for people who are really looking at this seriously in their community.
to understand what it takes and you know of course being connected with a network of people who have been involved firsthand with homes such as you know George Mark I think of Ryan House and Phoenix those folks that understand what it looks like to provide the care what it means to get brick and mortar up and running
funding, staff, services, all of those things that you take into consideration. That's a great website to go and actually look at to understand what's happening across the country.
Cara Lunsford, RN (38:24.526)
That's perp. All right, so repeat the name of it really quick for everyone.
Pamela Roman (38:29.051)
Yep, I will. It's a long one, so I get it. National Center for Pediatric Palliative Care Homes. Yes.
Cara Lunsford, RN (38:39.182)
Perfect, perfect. And I have had the great privilege and honor of having met with Jonathan. He is, like you said, very passionate. He takes all of his calls from inside his son's bedroom. His son passed away, but had a life-limiting disease that for many, many, years.
Pamela Roman (38:52.71)
Mm-hmm. Mm-hmm.
Pamela Roman (39:07.901)
Mm-hmm.
Cara Lunsford, RN (39:08.11)
And so this is very close to home for him, but it makes him an incredible champion for something that is so important to our society. So I'm glad that you mentioned his name and I agree, I don't think he would mind at all.
Pamela Roman (39:12.775)
Mm-hmm. Mm-hmm.
Mm-hmm.
Pamela Roman (39:21.68)
Yes.
Pamela Roman (39:27.501)
Not at all. And I will say that I feel very blessed to know Jonathan and Holly and actually to have been part of the team that was able to care for their son, meet their son, Ryan. And just again, I think when we talk about kids and families, they enrich your life.
because of what they teach us, right? Yeah.
Cara Lunsford, RN (39:57.112)
So true, so true. Yeah, I can see that that's such an emotional thing for you. It is for me too. I feel like it's something that has filled my soul. Yes, it can be heartbreaking at times, but it's heart fulfilling in more ways than I can even count.
Pamela Roman (40:06.781)
Yeah.
Pamela Roman (40:15.933)
Mm-hmm.
Pamela Roman (40:20.017)
Yes, yep.
Cara Lunsford, RN (40:27.36)
And so I think that the stuff that really ends up being heartbreaking for me is the lack of resources or the lack of unnecessary suffering or unnecessary pain. I can deal with end of life. I can deal with helping someone transition peacefully. I can deal with helping a family to experience respite and then take on that.
Pamela Roman (40:27.506)
Yes.
Pamela Roman (40:39.141)
Yes.
Pamela Roman (40:45.02)
Yes.
Pamela Roman (40:48.733)
Mm-hmm.
Cara Lunsford, RN (40:55.798)
responsibility of caring for their child while they go and take a break. I can do that and that is not heartbreaking. It's heartbreaking when you see what could be the type of things that are afforded when you have means and when you have money because I've worked in those situations as well where families have a lot of money and they can afford a lot of care.
Pamela Roman (41:08.091)
Yes. Yes.
Pamela Roman (41:16.349)
Mm-hmm.
Pamela Roman (41:22.727)
Mm-hmm. Mm-hmm.
Cara Lunsford, RN (41:25.678)
And that is always heartbreaking for me because I think that should not be something that is exclusive to people who have money.
Pamela Roman (41:36.071)
Correct, absolutely, yes. Because truth is children aren't, they don't ask for this situation, right? But what they require of us is to be able to take care of them, yes. So that requires, again, people, podcasts like this, talking about it openly, National organizations that are founded by
Cara Lunsford, RN (41:38.861)
Yeah.
Pamela Roman (42:06.001)
people who've had the experience and are passionate about this cause and know how to drive that forward, right, is to be able to have, yeah, folks that support every, you know, area of the globe in which these children and families need the support, help, guidance, if you will.
Cara Lunsford, RN (42:31.694)
Well, I am incredibly grateful that there are people in the world like you, Pam. I am really, I feel such a sense of privilege having been able to chat with you today about such an important topic. And I hope you know that you can always reach out if you need anything at all. I am happy to help in any way.
Pamela Roman (42:38.26)
thank you.
Cara Lunsford, RN (42:59.256)
possible and hopefully just this episode gives more voice and awareness.
Pamela Roman (43:04.847)
Yes, you as well. Thank you for your service and giving a voice to it and hopefully, you know, change comes, right? With increased awareness, yeah. So, thank you.
Cara Lunsford, RN (43:17.57)
Yep, absolutely. Well, thank you. Thank you so much for joining for the podcast and I look forward to connecting with you hopefully in person someday.
Pamela Roman (43:30.671)
Alright, that would be great.
Cara Lunsford, RN (43:32.792)
That would be amazing. All right. Till next time.
Pamela Roman (43:37.819)
Alright, till next time. Take care. Be safe. Bye bye. Okay.
