Ashley Bright asks an incredibly important question: Who can families turn to, in order to get guidance in navigating the complexities of healthcare these days? Geriatric care manager, healthcare/ medical/ patient advocate, health navigator, or social worker – whatever the name, there are professionals who can help with better understanding your journey in the maze of the healthcare system. How do we find someone? What can they do to help? What kinds of questions should we ask along the way?
Connect with Ashley here www.linkedin.com/in/ashleyrbright
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Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the best life, best death podcast. Today I’ve got a really neat guest. This is Ashley Bright. Hi Ashley. Hello Diane. And Ashley and I met through the Conscious Dying Institute, which is now called the Conscious Dying Collective, where Ashley is on faculty, and she lives in Tennessee, and she’s got all kinds of things to offer in terms of what she brings to the experience of end of life.
And today I really specifically wanted to talk with her about this, this term advocacy and advocate. You know, what does it mean to be a medical advocate? What is a patient advocate? How do we, you know, how do you, my listeners tease out what these terms mean and come to understand how they can help you?
So welcome Ashley. And just, you know, start off, tell us a little about yourself. How did you get into this field of work? Sure.
Ashley Bright: So I am an end of life doula and started out [00:01:00] actually in the healthcare arena there. I’m a social worker. And I worked for several years in a skilled nursing facility here in Nashville, well, north of Nashville and just came to realize really that.
Sometimes I would have patients and families who are brand new to being in this kind of health care system. And when we say system, you know, once you kind of enter that through some when you’re a certain age, and you have some illnesses that just kind of keep it going back and forth, you know, from the hospital to skilled nursing to home and then.
Maybe you’re going to be looking for care after that, and it’s just kind of a whirlwind of information that hits patients and families all at once. And as a social worker for these patients and families, I was noticing a lot of confusion and just a real need for more guidance that extended outside of the facility where I was working.
And I was thinking, I really wish I could [00:02:00] help beyond.
Diane Hullet: Yeah, that makes so much sense. Like it’s just kind of a maze to navigate. And the funny thing is until we have to navigate it, we’ve never navigated it. And then all of a sudden there you are thrown in. So to have somebody who can help with that and guide with that seems huge.
So you kind of took social worker skills and end of life doula training and put them together.
Ashley Bright: For sure. And so I do have a, a business where I do healthcare navigation and advocacy and my business partner is a nurse. So she’s been an LPN now for 30 years. And so I feel like combined with nursing and social work, you know, we, we’re able to provide a lot of resources, you know, for families here in the area.
Diane Hullet: Which phrase do you use? What do you call yourselves?
Ashley Bright: Well, you know, that’s interesting. So. We’ve used, we’re trying out several different things because you just never know what’s going to speak to the community. Where is your community [00:03:00] at when it comes to receiving information. So we mostly use healthcare advocate.
Case manager is still a little clinical and doesn’t really fit who we are. But healthcare healthcare advocate or healthcare navigator is something that we use a lot for that.
Diane Hullet: So in different states, like somebody might Google health care advocate or they might Google patient advocate. Is it, is it common to have people outside of the system like you and your partner who can then help navigate within the system?
Ashley Bright: I think it’s becoming more common as people are seeing that it’s with Medicare regulations, health care regulations and the. Overwhelming this of all that information, they’re saying that they do need help. I was looking around because you had asked me, you know, like, where can somebody go to find this information?
And I found that a more universally. Known term is geriatric care manager. [00:04:00] That seems to be when I Google that. Then more names come up, but again, it’s kind of like a, an end of life doula, right? So I’m an end of life doula, as are you but I have a lot of those here in, in our city who say, well, I’m an end of life doula.
I’m an end of life doula. We’ve all got these titles, but I separate myself by saying I’m a sacred passage doula because I did come from the conscious dying Institute. And that is what our certificate says. So, when you’re a care manager, you can also have different types of certificates within that realm, and that’s what you call yourself, you know, so where do you go to find an end of life do?
Well, that’s hard, you know, where do you go to find a care manager can also be hard, but there are places where you can go. If you just have not heard any word of mouth, you know, this person can help you. Well, we’ve got a place to start,
Diane Hullet: which is what, which is geriatric care manager. Thank you.
Ashley Bright: Well, what I would do, first of all, is [00:05:00] each state has an agency on aging and disability, so it’s AAAD.
And they provide resources, and so I did find that there is a website, the eldercare. acl. gov, and I’ll send that to you, and then it’s got some links that will take you to your state’s area agency on aging and disability, so AAAD, and then you can look for resources there, and I did find geriatric care manager type services on, on there, so if nothing else, Search for the free directories that are available to you through the triple I.
D. and then also we have one in Tennessee called age, age. Well, that is a free directory. And then there are some other paid directories for aging services here also.
Diane Hullet: And I was just laughing, I was talking to someone yesterday who listens to the podcast and she said, you know, I often listen while I’m driving and I always feel like I have to pull over to write stuff down.
So just know that we’ll repeat all that at [00:06:00] the end. And then I think we’ll, you know, I’ll also be sure that it’s written wherever the. Materials for this podcast appear. We’ll put that in the right and find it. That’s great. So, okay. So say you find a couple of people or you find a person or you hear from word of mouth, Hey, my family used this person.
You know, how do you even begin? What do you ask that person about what they offer?
Ashley Bright: That’s a good question too. So you just need a place to start. So sometimes you, when you’re, when you’re thinking about things that you need, You don’t really know what questions to ask or where to start because you just know, hey, I need help.
So a lot of people who are healthcare navigators, like me, we do offer, you know, a. A 30 minute free consultation, you know, just to see, is this something that we can help you with? Is this something that can be answered in 1 question or 2, you know, questions and then you just go about your business, you know, or we make you a couple referrals and you’re done.
So, [00:07:00] something that everybody wants to know, of course, is who pays for this service. Well, this is going to be a private pay service. So, you, if you’re interviewing some different companies, you might see which one fits your budget. You might see if 1 offers a sliding scale or something like that. So, you know, who pays for this.
And then also, yeah, what is it that you can provide to help me? Do you. Take me to the doctor’s office. Can you sit with me there? Do you provide. Just a list of things that I can. like a, like a care plan that I can follow myself. Do you offer to walk me through that care plan? Do you offer some of both, you know, what is your level of handholding?
I guess you could say through this experience.
Diane Hullet: Yeah, good. I love that metaphor because that’s really what it is. It’s like you’re, you probably as the family member or caregiver are walking this for the first time and you’re looking for some handholding on what makes sense. And that’s so great to know that a lot of people do a 30 minute free [00:08:00] conversation because as you said, it might just be getting the phone number of a resource and you could get that quickly.
And that’s really all you needed right then. Or, which I’m happy to do that. Yeah. Yeah. Or it might be a more complicated, as you said, a care plan and then a care plan that you’re, they help you walk through. Hi, Ashley. How did you just, I mean, what drew you to this kind of work?
Ashley Bright: Just that level of confusion that people have and just noticing you know, I was, I was hoping through my End of life coaching certificate and things like, okay, I’m going to be an end of life coach and an end of life doula.
Right? And I have this skill set and this passion, this drive to help people really figure out what their health care goals are, but a lot of people weren’t ready for that yet. They’re still figuring out where they are in this health care world. What. You know, let me just get through this treatment and this treatment, and then we’ll talk about, you know, when all else fails, and I’ll call the end of life dealer.
Well, what if we back that up a little bit? [00:09:00] So we were thinking we might could be better utilize or help people to be coached through what their desires are for their health. Or for end of life, if we back that up and help them while they’re still trying to navigate. And so, since I do come from that background, and so does my business partner, then it was just a natural fit to back it up a few steps and enter it in a different.
Diane Hullet: Yeah, I remember somebody was just telling me a story about meeting a couple where the gentleman was, was clearly dying. I mean, she said, you know, you met this person and you knew that they were at the end of life and, and had been very ill with it, with a terminal illness. And yet the couple was still saying to her, Oh, Oh no, we don’t need a doula.
And he died, you know, a week or two later. And, and they just weren’t ready to take that phrase as being applicable to them. So I think you’re right. If, if she had been introduced as a, as a healthcare navigator, [00:10:00] or as a support person for, I don’t know even what the phrase was comfortable for people. I mean, this is the interesting thing, right?
We, we have such a challenge facing our mortality. Even when it’s really right in our face, that it’s hard to get the help on board that can really help us walk that. So how do we rename it so that people are comfortable saying, Oh yeah, that applies to me. Healthcare navigator, that’s what I need. When really it may be this, the skills of an end of life doula that you’re primarily bringing.
Ashley Bright: Well, and you have to have a mindset and open heart and open mind as an end of life doula to say. Culture may not be ready for me yet, or my community may not be ready for this concept yet. And so, when you grab that certificate as an end of life doula, and you run out there in the world, and you hang up your little shingle, it’s like, everybody’s going to come, you know, because I’m, I have this thing that everybody needs, but your community is still.
So, what do we talk [00:11:00] about when we’re teaching new dealers or coaches is that this is truly a culture shift and you’re trying to turn a giant. Cruise ship around and it’s slow. It’s a slow moving thing. Still important work. So how do you meet people where they’re at, which is a very social working term, you know, meet them where they are.
And help from that point forward, and eventually you may get to where you are talking about end of life or what, what are my real goals? And how do I define what those goals are? And so, if I can meet you. Where you are by saying, I’m just here to advocate for what you want, then that might be the most helpful.
Diane Hullet: Yes, I’m struck again by this word advocate because I know in my personal experiences of, you know, my mother in law being hospitalized or father in law. There is this level of [00:12:00] having to show up, somebody in the family has to show up like morning after morning, talk to doctors, find out what’s happening, explain, Oh gosh, with my mother in law, there was this tender moment where she was having this terrible back surgery, you know, and we realized that the hospital staff saw her as this crippled old lady.
And we knew that she had just been in Spain walking around two months ago. So we ended up putting pictures of her up and talking to the staff and almost advocating emotionally for her, like explaining to people, this is a super vibrant, active person. Like this person in the bed who’s in so much pain is not who she is.
And we want to hope this back surgery will get her to where she’s got more of that vibrancy. So point is there was a huge amount of family advocacy that we were there being her advocates. And I often think, what about people who don’t have that or their beloved partner of 65 years [00:13:00] is too elderly themselves to be that kind of proactive advocate.
So I think the word advocate can apply to family members, adult children, grandchildren, whoever can step in, even dear friends, partners, of course, sweethearts. But then there comes this level of when that support system needs support or that support system isn’t there. And so how do people navigate the system with some degree of competency?
And sometimes it’s calling some professionals. And I think this thing about what are they called and who are they and how do you find them is a really interesting one, because I think when you’re discharged from the hospital, you’re supposed to have a social worker kind of talk you through what’s next steps.
But I don’t know if that always happens in the way people need or to the extent they need,
Ashley Bright: you know, finding those next steps from the hospital from skilled nursing. Yes, because it can often, as I was saying at the beginning, it can end there. So, if I’m your social [00:14:00] worker and skilled nursing, and I hand you off to someone else, I may never see you again.
I may never know what the outcome is and going back to what you were saying about how a. Elderly person can be or a sick person can be talked about or looked over and not talked to. I mean. I don’t know if you know this, or if your listeners know this, but even something as simple as an infection, like a, a UTI or a like pneumonia can really give an elderly person some altered mental status is the, you know, to the clinical, but really what that is, is confusion.
You know, that that infection has made them confused when, like you said, three weeks before they were traveling and stayed, you know so the family may say, you know, this person is not this is not their baseline. They are normally. Very with it and and [00:15:00] we should be involving them in this plan of care and in the conversation, even though they might seem confused, but never know what they’re really taken in.
But having those pictures up and things like that, like, this is who they are, you know, as a reminder. Because, you know, staff as caring as they try to be and that person centered care that they are really shooting for sometimes in the busyness of things. It’s just like a little poor ladies. She’s so confused.
So, and also coming into the health care system for families can be intimidating. So, you might see a doctor coming in and you want to try to advocate advocate, but they’re maybe talking down to you or talk speaking in clinical terms. That you don’t quite understand. So you’re right having that next level of in between.
Navigation, you know, even though you’re doing a great job as a family member. Keep doing that thing and as end of life do [00:16:00] was, what do we say? We’re here to educate families. On how to be there for their family member, same thing for an advocate, we are educating that family on how to step up and what are your rights as a patient and as an advocate.
Diane Hullet: Yeah, yeah, that’s so so powerful and so important and, and I always want to acknowledge to it. Oh, it takes so much time, it takes so much time. And so, you know, You’ve got a full time job, you’re working, you’ve got kids, you’re trying to make dinner. It’s, it’s really something to try to navigate these places of health.
Ashley Bright: Oh yeah, because oftentimes when you’re stepping into this role, you’re kind of thrown into it. And that’s kind of where a lot of my clients do come from is if you can just imagine maybe being a friend of a person and all of a sudden you find Yourself in this role of advocate for a friend and you’ve got your family over here that you’re taking care of and [00:17:00] and you’re working your job and you’re and you’re like, I’ve got this friend now that all of a sudden I wasn’t planning on, you know, caring for and I love this role and I love this person, but I’m just kind of out of sorts and I don’t know where to start or I’ve had a very young person in the early 20s.
Who found themselves in that role for two grandparents and, you know, she’s young and she’s got little ones at home. And that’s another scenario where it’s like, okay. I’ve not really had any time to ease into the thought process that. I am now caregivers for some very ill adults and I don’t know what to do.
And family is trying to help the best they can. But as you know, just the busyness of life. So call a professional, you know, and that’s that’s kind of 1 of my favorite lines that I tell even students when I am teaching do is is if you get stuck call a professional. I mean, don’t try to do this on your own.[00:18:00]
Diane Hullet: Right, right. It’s my husband said one time he said there’s all these skills that come into play with an aging parent and the death of a parent that you never had to learn before and you don’t really need them again until something like that happens again, but it’s a huge skill set that that is like this tsunami that we’re not prepared for.
We just get hit by all the time. capabilities that are required. Yeah. There was this funny moment. I think I’ve told this story before, but when, with the back surgery thing with my mother in law, Russ educated himself so completely about it that one day he was talking to the doctor, one of these early morning rounds and the doctor said, now, are you a physician yourself?
Russ always joked, you don’t know. I just play one on TV. You know, it was like, that’s the level that he had to get to, to be able to talk there, speak about. L5 and the, you know, possible what they were going to do. So very interesting. And most people aren’t able to do that or don’t want to do that. And so [00:19:00] call a professional.
Ashley Bright: Very true. And, you know, their whole reason that I even got into healthcare, honestly my background is in insurance. I was an insurance agent for a while. And before that I worked for a nonprofit. So how did I end up here was I was caring for my grandparents. So I was their power of attorney and they weren’t assisted living.
Grandmother had dementia. My grandfather had in stage kidney disease. He was on dialysis. He was very with it but just couldn’t do anything for himself. And on top of that, he just had a lot of other comorbidities that. Required lots of specialists. So yeah, I had to teach myself some things too.
And I, I was a social worker. I had my social work degree never had used it until I thought this this is where I need to be using that. And so that’s, I went and got my masters and said, okay, I need to help other people because I feel [00:20:00] like this world, you know, it’s taken me 8, 10 years to figure things out.
So what if somebody else doesn’t have that kind of time? You know, and they could really use help, right?
Diane Hullet: Or just how do we disseminate the information? How do we make it simpler? I, I was talking recently with Suzanne O’Brien of doula givers, big doula training program. And she said that they are really shifting their doula program to create multiple tracks of doulas, right?
And so there is the sitting vigil with someone who’s dying doula, but there’s also elder care doula ship. And I, I loved that. I thought that was really a good way to kind of tackle this exactly what you’re talking about. You, you say, I’m a doula. How can I help you? And someone says, Oh, I don’t need that kind of service yet.
Ashley Bright: So, yeah. We also have that here in our town. We have a, a woman who is a Jero doula. So she. Helps people through the system. That’s what she calls herself. And then we have when that’s a dementia do list. So you know, a dual is non [00:21:00] medical support. So there’s not really any category to put us in. And so we’ve been using that term and so maybe.
Maybe at some point the doula term will be more widely recognized and we can put different qualifiers on that.
Diane Hullet: Oh, I love that. Yeah, not in a non that a doula is non medical support. That’s just such a great way to put it and can offer guidance and education, which, you know, it’s funny how. I think sometimes people think they need like the technical support but really a lot of times what they need is a hand holding and some information and it’s not as detailed as they might think it’s it’s really this guidance
Ashley Bright: guidance and organization because like I said when you’re caring for your own household and then you’re caring for somebody who is ill and they’ve got all these specialists and things like that that’s when it starts to become okay who pays for what what about longer term care What about Medicare?
What’s the difference between Medicare [00:22:00] and Medicaid? You know and who pays for assisted living? Who pays for rehab? What if they have to roll in? You know, it’s all this information that it’s not just what type of care do I need, which is a lot of it. That’s 1 of the things that we can come in and assess.
Is your loved 1 ready for a nursing home? Or is there a least restrictive environment? Can they make it? In assisted living or independent living for now, or can they just hire some caregivers to come into the home? What’s the best? Way to age in place for this person, which is always my goal, the less shifting around that you can do when you get into your last years of life, I think the better.
So, not only is it where should my loved one be, but who’s going to pay for this and how can I prepare.
Diane Hullet: Yeah, so these are the kinds of questions that you talk with people about and bring to the table and bring to the forefront, so that it’s not, you know, just a giant mess. [00:23:00] Thanks.
Ashley Bright: Yeah, exactly. So you were asking, you know, what are some of the things that we ask?
What, what are some of the things that I would want from you if I was going to navigate for you? So, you know, of course, I would want to know, well, do you have paperwork in place? Is there a power of attorney? Do you have a will? You know have you done the work on what your wishes are? Sometimes, you know, like, here in Tennessee, we have a health care agent form that’s kind of taking the place of the traditional power of attorney.
It’s just a front and back and you can name somebody to be your, your agent. And then you can check some check boxes that say, this is what I want and don’t want. So do you have that kind of paperwork in place or if not, how can I guide you to do that? What’s your budget like? You know, things like that.
And then we’ll talk about what level of health are you, you know, what specialists are you seeing? What are your diagnoses for now?
Diane Hullet: Right. What are your needs? Yeah. Yeah. That’s great. That seems like such a huge, huge service. I, [00:24:00] I just think of the number of people I know with aging parents who need these kinds of support services and often it’s happening out of state.
That’s a whole other thing.
Ashley Bright: I’ve done that. Yeah. So when I was talking about, you know, somebody young and having grandparents and I’m thinking about one that had to bring the grandparents. From another state to the, this state, you know, and so all the logistics that were involved in, in doing that, because yeah, when you’ve got Medicare or insurance, you got to transfer all that over and wow, it was such a web that we worked through, but, you know, we got through.
Diane Hullet: In your experience, when people contact you, is there like usually cooperation among family members or sometimes are the elders not happy about all this?
Ashley Bright: I guess, backing up. So, personally, here in this business that I’m doing, the elders are very appreciative. I mean, they have really.
They, they appreciate that their family is trying to help them and they appreciate that there’s somebody [00:25:00] they’re helping their family member, you know, through this. I’ve certainly seen. Through working in skilled nursing. That that can be an issue sometimes when. That loss of independence. You know, you start having to those feelings, you know, I’ve been my own agent.
I’ve been my own person for such a long time. And now I’ve got a family that’s coming in and trying to tell me what to do. So to me, I think we should incorporate the coaching of that with families to understand where their loved one is coming from when that’s happening. You know, they’re not digging their heels in, but it’s that loss of independence.
That’s driving their fear, you know, and so a lot of times they don’t want to sign paperwork. And so how can we work around those kinds of things that might be difficult? So sometimes you have to tiptoe into some things and as family, we can, [00:26:00] we’re just wanting to bulldoze because we see a need to get things done, but the patient or the client themselves is like.
I don’t really know if I’m ready for this,
Diane Hullet: right? Right. And how to, how to move. I always think how to move all of that upstream so that it isn’t this like mom fell for the 10th time and something has to happen in this kind of panicky way on everyone’s part. How do you move that upstream before mom has started falling?
And said, gee, what could we put in place? Have we removed the rugs? Have we put in handrails? I mean, I’m being super basic, but like, Oh, you’re right. Created an environment that keeps mom safe as long as possible where she lives now. And it’s really interesting how I think we, we, our reluctance to face mortality and our reluctance to talk about our aging bodies means that a lot of these conversations get put off until there’s a crisis and.
It’s it’s just makes it so much harder
Ashley Bright: again, which is why [00:27:00] you and I do what we do. So we’re trying to normalize that conversation early. So one of the, one of the things that my business partner and I offer is. To be someone’s health care advocate you know, being actually named as the agent in the paperwork so that we, but we don’t want to be named as that unless they have really had those extensive conversations with us.
So, you know, that care planning, or the best 3 months that, you know, that we’ve, you know, we do at the conscious dying Institute or collective, and we will do that with our clients before we will agree. To be their agent because we want to make sure number one that we know them front and back when something does happen.
But number 2, 1 of the things that we talk about is, of course, working towards completeness for if you were to die tomorrow. So we can work through all of those issues while the person is healthy and doing well, but also. What happens if I [00:28:00] get dementia and what do I want if I get dementia? Hey, it runs in my family.
It’s something I’m very concerned about me as a professional. I’m have have seen, of course, personalities change. And but if I know, if I would have known that my loved ones with dementia had wanted certain things, then I could be more confident in asking for those things for that person and not worrying just just like end of life.
But It happens earlier with the dimension. It’s the long goodbye. Right? So it’s got to start sooner. So, if you’re talking with people about end of life issues, you say, okay, let’s also include if you lose capacity, you still have a voice and you still have a choice.
Diane Hullet: And you’ve talked to us about that ahead of time so that there’s information.
I always say too, this isn’t one conversation, you know, this isn’t, this isn’t like one quick thing. Okay. We got it all figured out. It’s sort of over time. How do you keep bringing this [00:29:00] forward? Well, Ashley, I appreciate your time so much. Let’s, let’s rattle off a few resources again for people because we said some at the beginning and I think this is such a great service that there are professionals, there are ways to get guidance and navigate the health system, whether you call it medical advocate or patient advocate or health advocate or health navigator or social worker or geriatric caregiver.
They’re all professionals who can help families. understand what’s happening and get through the system at a difficult time.
Ashley Bright: Yeah, so you can always call, like I said, the AAAD, the Agency on Aging and Disabilities. So look up in your state what that is.
Diane Hullet: Triple A D, and say it again, Agency of Aging
Ashley Bright: and Disabilities.
Diane Hullet: Agency of Aging and Disabilities, great. And
Ashley Bright: you know, at least that’s what it is here in Tennessee. I don’t know if it’s, that’s a universal name or not. Honestly, I did not do my own research on that. But I did find that [00:30:00] the eldercare. acl. gov is a central locator for for your local office.
Diane Hullet: Terrific.
Eldercare. acl. gov.
Ashley Bright: And then yeah, and then just Google. I mean, you might have some great directories in your town that are, that people can pay to be in or that some nonprofits might put out. You can always ask your doctor if they have a directory because usually those directories do find their way to hospitals and doctor’s offices too.
So there’s a lot of ways to find resources.
Diane Hullet: Great. And how can people find out more about you specifically? So,
Ashley Bright: Working on, working on getting my website done. I’ve got a private doula website that I’m converting over, so that’s not done yet, but you can find me on Facebook under Life Journey Advisors.
Diane Hullet: Great. Love that name. Life journey advisors that really, really sums up what you do. So life journey advisors is Ashley bright out of Tennessee widely regarded and known as faculty on the [00:31:00] conscious dying collective. And of course you can find out more about the work I do at best life, best death.
com. Thanks for being a guest, Ashley.
Ashley Bright: Thanks, Diane. That was fun
Diane Hullet: and thanks everyone for listening. Have a wonderful day.