Debby Deutsch and her Journey From Hospital Chaplain to Patient Advocate!
Debby Deutsch is a Board Certified Patient Advocate who entered healthcare as a hospital chaplain before she became a devoted and passionate hospice worker. As is often the case for Independent Patient Advocates, personal and professional experiences collided, and Debby started to explore her future. She stumbled upon the Center for Patient Partnerships at UW Madison where she earned a professional certificate in Consumer Advocacy. She soon became the first cohort of BCPA recipients in 2018.
Additionally, she has founded and leads a team of nursing, case management and medical billing advocates in her private practice. She has been serving members of Gilda’s Club Madison as a Patient Advocate since 2016. Debby is currently also on staff as a Resource Specialist with the Cancer Support Community Helpline.
Listen to this enlightening discussion about Debby’s nontraditional entry into Independent Patient Advocacy and discover the many opportunities for anyone with experience in any aspect of healthcare can make the transition into a rewarding career in advocacy.
Transcript
Host
Debbie Deutsch, welcome to the Patient Advocacy Now podcast. Thanks for being here. Looks like a beautiful day where you are. Yeah, always nice. That makes everything a little bit easier. I find when you can look outside and there's just clouds and clear skies and things like that.
Debby
It is gorgeous.
Debby
Well, I'll tell you, we have long winters in Wisconsin, so we really, really appreciate summertime here. It summer goes very quickly.
Host
Yeah, how long does the season last for you?
Debby
Oh, it starts December, I would say through April. And April is when it gets very painful when we have snow and you just want it to be spring and you want to see bunnies and tulips and lovely things. So we welcome spring wholeheartedly.
Host
Yeah. Yeah, for sure. Uh, I, I couldn't, I can, you know, being LA born and raised, I, uh, have never really had a real winter. So, so I, you know, people's, you know, my kids want the snow all the time. And I'm like, I don't know, I feel like it's overrated.
Debby
Oh.
Debby
It's fun for Christmas and then you get tired of it. You really do.
Host
Right right make sense well you've been in the health care space for several decades now and you and you came into it as originally as a nurse is that right.
Debby
How?
Debby
No, I am not a nurse. I work with many nurses and I've worked with nurses for many, many years, but I originally trained as a hospital chaplain. I was actually headed to seminary to become an ordained minister. And I trained at a hospital here in Madison, Wisconsin. I went to work for the hospital and then went to work for UW hospital as a chaplain. And I was, I was poised to start seminary, but in my training, I worked with
Host
Okay.
Host
Thank you.
Debby
hospice nurses and I was like, wow, that is intriguing work. So I literally had to decide, you know, do I go to seminary as planned or should I listen to this large hospice agency that is recruiting me? And I went to work for a hospice group here in Madison and loved it, really loved it.
Host
In what role? What was the title that you were?
Debby
Well, I worked with the admissions team. So I worked with folks when they were entering the hospice system or thinking about entering the hospice system. And I worked with folks, you know, met them in their homes, met them in hospitals, met them in care facilities, sometimes in clinics and in an emergent situation. And really loved that type of work. But what it taught me was that, you know, there are some patients who just kind of slip through and I could see it happening.
Host
And then that's it.
Debby
But I didn't have any credentials. I'm not a physician. I'm not an RN. I just had zero credentials. So all I could do was, you know, kind of watch it happen, sadly, and, you know, try to support as I could staying in my role. And it really bothered me to see people just, you know, not get what they needed. And, uh, I, I had the experience of, of being with my younger sister and my father within about an 18-month period.
and both of them at end of life and, you know, being hospital, you know, being bedside with them and acutely feeling, you know, I wish everybody would slow down. I wish, I wish folks would explain to us what was going on. And that's a horrible feeling, really not a good feeling. And I, after my dad passed away, I thought, you know, if I could go back to school,
and get some credentials and really learn about this, maybe I could help someone. And I stumbled on a program here in Madison with the University of Wisconsin Law School. It's a postgraduate certification, multi-disciplinary program where I could study the art and science of patient advocacy. And I loved it. I loved being back in school. I loved...
Host
Okay.
Debby
just all the things I learned. And as I was studying, I was thinking, now, what can I do with this? How can I best help? And I really wasn't interested in working with a hospital system or working with an insurance company, because in my mind, you are working for the system who is paying you. And you can only really do so much for the patients and families that...
really need your help. So I thought, you know, I'm going to hang a shingle and I'll see, I'll see what happens. And I'm thrilled to say that this month is our seven year anniversary. So we're seven now. And I looked it up this morning and we have helped 192 patients and families. And you know, some of them are from the very early days and we're still supporting them. And that
Host
Thank you. Come on. Thanks.
Debby
That is a wonderful thing. We could not have done it without each and every of these patients and the families that by extension were also helping.
Host
so fascinating. You're the first chaplain that I've had on the show and it's, you know, it's interesting. We have, we've had a lot of nurses, we've had people from billing, but in, in many ways I feel like the chaplain role kind of addresses the hands on personal kind of care that often in that often advocates find that they're giving. Uh, do you feel like that's an accurate statement?
Debby
Mm-hmm.
Debby
Mm-hmm.
Debby
I do. And what, and I still draw on this training, I swear to you every day, the big takeaway for me with my chaplaincy training is that I learned very well to meet people where they're at. And it doesn't, you know, Madison is a very diverse population and it's, it's as likely that you're sitting bedside with a Methodist as with a Buddhist. That's just the way it is.
Host
Two, one, bye.
Host
Mm-hmm.
Debby
I had to learn a broad spectrum of, I think it was 138 faith denominations. But you learn that it doesn't matter. It doesn't matter when someone's in a hospital bed, really. They're frightened and they might be confused. They might be in pain. There's all kinds of things that are simmering up. And if you can just
Host
Thank you.
Debby
If you can manage to meet someone where they're at and form a bridge, that is everything. And chaplains are lucky because they can take time. And a lot of other, the other team members in the hospital, particularly if you're in an emergency room or an ICU, things are happening really, really quickly. So you can be that person who's kind of the constant and making eye contact literally right beside the bed and holding the patient's hand and helping them through.
Host
Thank you.
Host
Thank you.
Debby
whatever it is. So it's totally ground for sure, but it taught me a lot that I have brought into my advocacy practice.
Host
And what do you feel like was missing from the chaplaincy that you now put in advocacy where, you know, you, you get your hands a little more dirty. It's not just addressing the spiritual and emotional needs. Right. Obviously. I think the only thing that does carry over is you're spending more time. Like you said, with the patients than like a nurse or a doctor might that, would you feel like that's
Debby
not at all, actually. I don't present as a chaplain. It doesn't matter.
Debby
The time is really invaluable. And the other thing that is really a big focus for us is understanding what the patient is dealing with today and understanding what the options are today, knowing that next week it could look very different, depending. And we are not making decisions for anyone.
Host
Yeah.
Host
Yeah.
Mm-hmm.
Debby
But we are helping folks understand, okay, you've got this option, or you've got this option, or you've got this option. And this is what these various options might look like for you. And then let the patient, supported by their family, make the best decisions for them, but remaining poised to help when something changes. And I promise you something will change. So we're right there.
Host
And then.
Thank you.
Debby
ready and able to help and pulling in other resources as needed. Excuse me. Um, so that's in a nutshell, I would say that is really the essence of kind of what we're doing and really being an objective presence. When a lot of other things are falling apart, you know, a lot of, um, healthcare situations are very emotionally laden.
Host
Thank you.
Host
really
Debby
And we're the common study objective person who can, or persons who can kind of help translate what is going on in everyday language.
Host
So is that D is that how you view your role or I mean I know I we've dealt with so many different kinds of advocates And so many of them wear different hats Let's let me rephrase this if I was a patient and came to you and said what does an advocate do? What like what services do you actually provide? What would be you know the elevator pitch of what it is that you would actually provide for them?
Debby
Thank you.
Debby
So what I would say is that we are, we're translators. We are, we're tour guides. We're helping folks, we're taking folks hands and we're helping them down a path. And it might be a long and windy path. It might be a very short path from A to B, but we're helping them figure out the terrain, the local language, the shortcuts. And, uh, that is what we do. And it's, we're not working just with elderly people. People.
Host
Thanks.
Debby
assume that all the time. It's not just elderly people. I would argue that honestly, someone of any age, including someone who is not yet born, meaning prenatal, you know, anyone at some point in their life can and should really benefit from a patient advocate because we can help you navigate all those twists and turns. But excuse me for the cough.
Host
Okay. It's, uh, I think it's that the seasonal changing and everything that people are going through. Um, so navigating through it. So are you, you know, do you, where do you guys find that people usually come to you at, uh, or find your services? Is it when they get multiple diagnoses? What's the most common time that people come into your fold?
Debby
We are very lucky in that we are starting, for the past few years, we've started to see a lot of word of mouth. People tell their friends about us helping them. I should say that I do have a team. This is not just me. I work with four really well-seasoned registered nurses. I also work with a social worker. And interestingly, we have a grief counselor and we are all a team.
Host
Please.
Debby
Generally speaking, there are two advocates that are assigned to each case. And it's usually a very kind of specialized combination of nursing advocacy and case management. Sometimes there's some medical billing stuff that we do. Sometimes as I said, we loop in a grief counselor because interestingly, even if folks are assigned, if they're going through it, let's say they're going through a...
You know dire prognosis. We're talking about palliative care. We're talking about hospice care. We're talking about end-of-life They might have An assigned grief counselor from their health care system or perhaps from their hospice But for whatever reason it's not a good personality fit Additionally because of cove it isolation which were thankfully coming out of we're still seeing the effects of
Host
system. We're going to have to start with the system.
Host
Sure.
Host
Okay.
Debby
loneliness and isolation for many, many people during COVID. So those folks also can really benefit from some grief support. So we've identified that as a need. We constantly are listening to where folks are hurting. What is the pain that we can help stop? And that's how we identified that need.
Host
Yes.
Debby
Back to your question about how folks find us. So a lot of word of mouth. Interestingly, and I think we start
Host
Not just how, not just how they find you, but when they come to you, where in their medical journey.
Debby
when they come. Yeah. Ideally, it's right at the beginning, but that doesn't often happen. We've started to see, and this really tells me that we're doing something right, a lot of things right. We've started to see physicians call us, which is wonderful. That is wonderful. Because
Host
Yep.
Debby
When we're with a patient and we're seeing them in the clinic, let's say, or we're seeing them in the hospital, an astute physician can quickly see that we are swimming with this patient from home to clinic to hospitalization, sometimes to rehab. We're going all through various parts of the healthcare system with them. And a physician can see, hey, as an advocate, you can help.
Host
Thank you.
Host
Thank you.
Debby
provide me with a lot of information that I can't get myself because I'm stuck within my clinic walls. So that makes us think, you know, honestly, when we get physician referrals. But I would say that folks really call us when they are at some point that they just cannot figure out themselves. They just can't. It's either their own health care situation.
Host
Thank you.
Debby
or it's mom or dad or special needs child or 20 year old daughter. Excuse me. And for whatever reason they thought they could figure it out and they're, they're running into brick walls and they just, they can't, or a combination of we don't have the bandwidth, we don't know how this works. And by the way, this is way too emotional for us to, to deal with. So we realize we need to call in some professionals to help us with that. And that's, that's what we hear often.
And we're happy to help with those types of things.
Host
And how long do you, do you say that people typically stay connected to you as advocates?
Debby
That is a really good question. And I'm very intentional of explaining this to people because in my mind, part of, you know, there's a lot of people say, oh, our health system is so broken. There's a lot of things that in my mind are not good fits. For example, let's say you contact some kind of home agency to help with either skilled nursing help or non-skilled nursing help. And they will say, we'd love to work with you.
but you have to commit to working with us for 10 hours a week or 40 hours a month or whatever their model is. And I understand that that's their business model. I take a lot of pride in the fact that we realize that things ebb and flow. So I always tell folks, you know, there are many weeks that you are not going to want to see us because things are going really well. Yay, that's wonderful. But make no mistake. When something happens...
Host
Yeah. We're here.
Host
Thank you. Yeah.
Debby
We are right there to support you. So, you know, people might be hiring us for, you know, a task of, we need to get dad into memory care. Can you help us with this? You bet. So it might be very short. Sometimes we can see from the get-go that it's going to be a long path, but not always. So if in fact it is a short case, we do what we were hired to do, go back to the patient and family and say,
Host
So, you know, I'm going to show you.
Host
Thank you.
Debby
We have loved working with you. We think we've solved what you hired us to do. Looks like our work is done. We would like to close the case now. I promise you more often than not that the patient family will say to us, oh my gosh, we have loved working with you. Can you just keep us on your caseload in case something happens? Of course, of course we can do that. And that feels really good to us. So it's...
Host
Thank you so much.
Debby
It's a matter of we're there when you need us and when you don't need us, it's okay. You know, but we're always available to pick up where we left off.
Host
And, and do you end up having some clients who stay on your caseload for years?
Debby
For years, yes, through end of life, for years, for years.
Host
That's amazing. Yeah, no, that's a testament to the, to the, um, quality of the care that you guys are providing. Um, what role does the kind of the loved ones and the partners of the people who are who you're treating with play as an advocacy, someone's husband, wife, their children. Um, you know, are you dealing with them mostly? Are you dealing with
the patient themselves, is it a mix? What does that look like for you?
Debby
It's a mix. It would be more tipped to the family if it were a dementia patient, for obvious reasons. But we do a lot of, and we tell folks this right from the get go, we do a lot of education, a lot of teaching, and a lot of coaching. Because so often, the patients themselves and the families, they don't understand how it works. They don't understand...
Host
Thank you.
Host
Mm hmm. Yeah, next.
Debby
how referrals work within a medical team. They don't understand, it could be just as simple, and it sounds very, very simplistic, but they don't always understand that hospitals and clinics and systems are horribly overburdened. And we have to sometimes fight to get them an appointment, to get them seen by their
Host
Thank you.
Host
And I think that's it. Thank you. So, bye.
Debby
their clinician because the clinicians are so backed up. And the other thing that I promise you is a real thing is that the systems themselves are really forcing physicians and members of the healthcare team to kind of push these patients through their clinics as quickly as they can. And I have had physicians tell me, this is not why I went to medical school.
Host
Thank you. One second.
Host
Yeah.
Debby
I did not go to medical school to realize that I'm kind of pushing folks through my clinic, because my system is saying, you've got 15 minutes at the most to see this patient. And the physician will tell me, Debbie, I would love nothing more than to explain to my love, my long time sweet little Mrs. Jones, what her cancer diagnosis looks like, but I've only got so much time.
Host
Thank you.
Debby
And that to me is so sad. So we help cushion that and explain to folks, this is how it is. We're going to try to get the physician to slow down, make sure that your questions are asked, make sure that they're answered in a way that you understand. And then after the appointment, we're gonna talk to you about everything that happened. And if you want us to, we will communicate with your family about what transpired in the appointment.
Host
Thank you.
Debby
It's a lot of teaching and coaching and educating about how our systems work.
Host
Yeah, absolutely. And that's, that's one thing that is, I feel at least sorely missed in, in the system as it stands on that subject. Where do you see, um, room for improvement since you're in it constantly in the current medical healthcare system that we have in, in the United States? Do you feel like if we fix this one thing, it would make my job a lot easier?
Or are you kind of like, it's too complicated. The web's too tangled. I can't pinpoint one specific thing.
Debby
There is one big thing, it's funny that you asked me this because I think about this a lot, but nobody's listening to me in regards to this. But what I would love to see happen, and I truly think this is needed, is as we all age, if there was a way that we could kind of join hands with each other and come up with some kind of cooperative.
care facility where we're kind of taking care of each other as we're able. Because I truly believe I've seen this so many times when folks realize that their care needs are increasing and they have to go into some type of, of care setting, whether it's assisted living or CBRF or skilled nursing and their minds are blown rightfully. So they realize how expensive this is. And.
Host
So
Debby
If there was some way, I know this is a little Pollyanna, but I really do think about this. If there was some way where we could do more of a cooperative model and make better use of Medicare and Medicaid dollars for the good of all. I would love to talk to legislators about that, but I don't really have time. I'm really honest with you, but I do see that as
Host
Yeah.
Debby
as something that could just be so beneficial for all of us. Because most of us are going to need this care at some point, and it's expensive.
Host
Yeah, yeah, no doubt about that. I mean, maybe something to think about in those large retirement communities, it might be a kind of a fun pilot program to put in place. You know, some of those Florida.
Debby
Yeah, or if you're about going to Sweden, they have facilities that are college students and the elderly. That's beautiful. That's a lovely, lovely thing. So I wish we could be a little more creative and a little more, it would certainly be cost effective, I would think. But...
Host
Yeah, I like that idea. Maybe if we can value it as much as military service and we can kind of reward some younger people for doing it, then there's definitely ways to think outside the box.
Debby
I would just love to see what will happen.
Debby
Great.
Debby
Yeah, think outside the box, exactly, because so much of what, where we thought this was going, you know, doesn't really make sense. I don't know. I see a lot of pain points with a lot of people. So it makes you wonder.
Host
Yeah. What about the world of advocacy? How do you see that evolving? How have you seen that evolve over the last five years, ten years? Where do you think it's headed?
Debby
Well, I was lucky in that I was among the first cohort that sat for the very first time ever offered board certification. And this was in 2018. So I was very conscious of the fact that we're a tiny little army. I think there were 118 of us, if I remember correctly, that passed that first wave of board certification. But what is very exciting to me is that
Host
Thank you.
Debby
The boards are offered twice a year. My understanding is that, you know, we're growing. We're growing. And that is wonderful because there's a lot of need for this. And I think that, um, I love when I get the opportunity to talk to other advocates, you know, in a, in a workshop setting or, or some kind of large, um, setting because we're all.
Host
Okay. I'm just...
Debby
soldiers in this and we immediately can strike up a conversation very easily with each other because we're seeing and doing the same things and we're trying to solve the same problems. So I think we're all pretty united in the fact that there's a lot of need. You can make a living doing this but you've got to understand that you have to have a good business model. So that takes kind of a skill set that some advocates might not have. You can
figure it out. But I am encouraged and encouraging of other advocates because I do believe that the world needs us. And I truly hope that this is just a growing, growing field. I do believe it will be. We're certainly not slowing down at all.
Host
Well, speaking of that, if someone wanted to reach out and work with you and your team directly, what's the best way for them to connect with you?
Debby
Oh, you bet. We have a website, patientcarepartners.org. There is a 1-800 number on that. In all, honestly, I'm the intake office. So if you call the 1-800 number, you get me.
Host
You can.
Host
That's an upsell, not in all honesty. That's, that's a reason to call.
Debby
I think I'm sure my cell phone number is also on our website. So I'm easily available. I'm happy to talk to truly anyone, whether it's someone who is thinking this might be a wonderful career opportunity or another advocate who might be stuck on a case and wants another set of eyes. And advocates, by the way, do that all the time. And it's very, very helpful.
Well, I've reached out to many advocates over the years and vice versa. Um, or, you know, a patient and family that's wondering if they might. Benefit from having a private patient advocate. And so many people, this is so interesting, John, so many people will call and say, you know, I know there's senior centers out there and I know there's, there's lots of, of free groups that can possibly help. You bet. I refer all the time.
to those types of organizations. And thank God they're there, truly. But more often than not, that same person will circle back and say, you know, I really appreciate that there are groups like this, but that's not quite what I need. I don't fit quite in their bucket, or the line is so long, I can't wait that long. So I really need to hire someone. Would you talk to me about that?
Host
Yeah.
Debby
So sure, happy to talk to folks in that situation, but I do refer constantly to kind of the for free help because it's out there. But what I will say is that so often folks say, I need more than that. My problem is such that I need more, I need more. So.
Host
Yeah.
Host
I think that's how the advocacy profession was kind of started by people needing more than what they got in the hospital. You know?
Debby
I know when my sister was hospitalized, I would have, oh my God, I probably can't even talk about this, but I would have been very grateful to have a patient. Ten years ago this week, thus the tears, I'm sure. Sorry. Sorry about that. But I remember acutely how it feels to have so many questions. And
Host
How long ago was that?
Debby
You just feel like the medical system cares for sure. I mean, my sister got solid medical care, but what my heart really wished for was someone to take the time to really explain to us. And my family's pretty bright, but we were just lost in this world. So...
Debby
So anyway, I just totally went off track and I don't even know if I'm answering your question, but.
Host
No, that's okay. I mean, I think we all have those horror stories of just feeling lost and confused and in over your head.
Debby
And so vulnerable, you feel so vulnerable. And I just, I remember that feeling. And I, my heart goes out to someone who is in that spot because I remember it so well. And there are people that can help you, you know, objectively who understand, you know, how these things work and can provide additional clinical information and just help figure it out. And
you know, this is my diagnosis, what are my options? What do I do? Well, let's look at it, let's unpack it. And frankly, that's where my nurses, who I just work so closely with, they can provide that clinical education to really help understand diagnosis. I'm not a nurse, I'm not a clinician. So it's, our patients are, you know, really benefit from having that skillset.
Host
Mm-hmm.
Debby
on our team.
Host
Let's have that URL one more time for how they can get a hold of you and your team.
Debby
Sure. Patientcarepartners.org is our website. I'm proud of our website. There's a lot to look at. There's interviews. We've been interviewed in the media. We've been interviewed by Fox News in Milwaukee a few times. So there's things to look at. There's things to read. There are testimonies from real people that we've worked with. There's some videos.
Host
And you work nationwide these days with being remote and everything, right?
Debby
We do, we work nationwide, depending on what the need is. Um, COVID blew our socks off because we very quickly realized we had to pivot to secure, um, uh, platforms that were virtual and just incredible. And we started to work with folks that we realized we were never going to meet, you know, in a room together, we would meet them virtually, but
You know, they were in Arizona or Nevada or Virginia. It just was mind boggling, but it really cemented the fact that the needs are real. The needs are everywhere. And let's just try to help as we can. And that, that would, I mean, if there's a blessing from COVID, um, that would be one of them. We, we realized that we could do what we do over large.
fans. It was mind boggling actually.
Host
Thank you so much for being here and sharing your story and your wisdom. I really appreciate it. Absolutely. Well, that went great. I stopped.
Debby
Thank you, darling. Thanks for having me.
