End-of-Life Conversations with Elder Care Coordinators Kathleen MaGee and Chelsea Duckers

My guests today are Kathleen McGee, Elder Care Coordinator and Director of Care Coordination at Rothkoff Law Group and Chelsea Duckers, one of the care coordinators at Rothkoff Law Group.

In an ideal world, we'd all proactively plan for future challenges, especially as our needs change with age. Reality often sees us facing issues reactively. Rothkoff clients range from those in good health to those in crisis, spanning the entire spectrum. From recognizing fall risks and home modifications for the healthy and independent, to navigating hospital stays and acute healthcare changes for those in crisis, our care coordination steps in at every stage.

Since the pandemic, they have noticed a positive shift. More people are coming in earlier, expressing a desire to plan ahead rather than waiting for a crisis. The uncertainty and fear during the pandemic have normalized conversations around death, prompting earlier considerations for end-of-life planning.

The pandemic served as a stark reminder that unexpected health challenges can happen at any age. While discussing death remains a societal taboo, the pandemic forced us to confront the idea, challenging us to be a part of our own conversations and make our wishes known. It emphasized the importance of early planning to avoid emotional decision-making during crises.

There is a cultural discomfort with openly discussing death, a discomfort that Rothkoff Law Group aims to alleviate through education around death. Kathleen and Chelsea encourage families to select agents confidently and have conversations with loved ones to avoid the shock of discovering unspoken wishes during times of crisis.

While we understand the societal aversion to discussing death, embracing these conversations can lead to a healthier relationship with the idea of mortality. Creating a dialogue around death can have a profound impact on living more present and fulfilling lives. It's an ongoing journey towards breaking the stigma and embracing the inevitability of death with grace and preparedness.

Transcript

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[00:00:00] Chelsea: Just because I'm a death doula doesn't mean I'm not afraid to die, but I think because I'm talking about it, I'm creating a healthier relationship with it. If you can create a healthier relationship with the idea of death, I think we can do more in regards to death planning. 

[00:00:15] Jill: Welcome back to Seeing Death Clearly.

[00:00:17] I'm your host, Jill McClennen, a death doula and end of life coach. Here on my show, I have conversations with guests. that explore the topics of death, dying, grief, and life itself. My goal is to create a space where you can challenge the ideas you might already have about these subjects. I want to encourage you to open your mind and consider perspectives beyond what you may currently believe to be true.

[00:00:40] In today's episode, I have two guests, Kathleen MaGee and Chelsea Duckers from Rothkoff Law Group. Our discussion starts with what they do as elder care coordinators with end of life planning, the positive shifts they have seen since the pandemic, and the spectrum of client experiences. We also get into the role of end of life doulas in creating a healthier relationship with mortality, breaking societal stigmas and facilitating conversations that empower us to live more present and fulfilled lives. Thank you for joining us for this conversation. Welcome to the podcast. Today I actually have two guests, which I've not done before, and this is pretty exciting. I have Kathleen MaGee and Chelsea Duckers.

[00:01:24] I know both of them through the law office that I recently started working with, which I'm really excited. So we're going to talk about. A lot of different things today. Chelsea is also a death doula. And both Kathleen and Chelsea, you're both social workers, correct?

[00:01:38] Kathleen: Yes. I'm a care coordinator. I did not go to school for social work, but through experience, I think I've been adopted into the social work family.

[00:01:48] Jill: Thank you for being here. And why don't we start with both of you just telling me a little bit about yourself. And Kathleen, if you want to start, just kind of tell us about who you are as a person.

[00:01:57] Kathleen: Sure. I'm Kathleen MaGee. I am an elder care coordinator, a director of care coordination with Rothkopf Law Group.

[00:02:04] But outside of work, I am the middle of two children. I have an older sister and a younger brother. I grew up in the Northeast Philadelphia section of the city. I'm engaged to be married next month, which I'm really excited about. So I'm going to take on the new role of being a wife. And I've been in this field for, I guess, about 15 years, having graduated at.

[00:02:26] From Bloomsburg University, I studied psychology there, and after I graduated, I took a position as a social services coordinator after activities at St. Joseph Manor, which is a long term care community in Montgomery County, Pennsylvania, and I took on the role of the discharge planner and the social worker for their long term care and rehab units, and that's Where I really started to develop an interest in this field and really grow my knowledge in this field with regards to services available for the aging population.

[00:02:58] And I joined a Rothkoff Law Group about 10 years ago and started working with our clients here in Pennsylvania, Philadelphia and Bucks counties. 

[00:03:06] Jill: Awesome. And then how about you, Chelsea? 

[00:03:09] Chelsea: Sure. So I am Chelsea Duckers. I am one of the care coordinators that Kathleen oversees for Rothkoff. I'm on the Jersey side though.

[00:03:17] I'm one of the Jersey girls. So I cover basically all of South Jersey with the firm. I did go to school for social work. I went to Stockton college for social work. I grew up in North Jersey in Sussex County, if anybody's familiar and. Basically the boondocks, but I really loved South Jersey. I had two internships for my junior and senior year for social work.

[00:03:39] I, when we were being placed for those internships, I specifically said I didn't want to work with older people in a hospital like setting. And I was placed in an acute rehab. with older people in a hospital like setting. So that was a little bit of a struggle for me, but I really liked it. And then my senior year internship, I was placed in a long term cares of acute facility.

[00:04:01] It was pretty hard for me at first, but I was lucky. I had some great mentors. They kind of helped me figure out why I was so nervous about working with the older population and why it was so skittish around things like death and dying, getting older dementia. All those types of things. And that's where I realized that that's kind of where my passion lies for work.

[00:04:22] So I've worked in facilities like that since I became a social worker officially, whenever I graduated like 10, 12 years ago, I thought it was. a lot less than that when I first started doing the math. And then I ended up with Rothkopf about four and a half years ago. I've loved it ever since. I've been married for two years now and have a 18 month old who runs my life.

[00:04:48] Jill: Yes, they do that. And it doesn't really get better even as they get older. My nine year old runs my life. It is what it is. Right. It's funny, being a parent is interesting, for sure, and aging and getting to that point where I'm having the conversations with my mother and even my own children about death and dying and aging and all these things that, yeah, we don't really like to talk about because it does freak us out a little bit.

[00:05:14] But not talking about it, isn't going to make it go away. So we have to talk about it. And it's interesting because like hearing both of you talk about your roles before I got into this work, I really didn't know how much there is. Like all these different little pockets of people that work within this industry of working with people as they're aging and they're nearing the end of life.

[00:05:37] And there is a lot to think about, and there is a lot to navigate. And it seems like. Putting it off is not going to help that if we can start this sooner than later. What's your typical client like at Rothkoff when you're working with people, is it all older people? Is it younger people that are maybe somebody like me in my forties that is like, I don't know what to plan for.

[00:06:00] How do I make sure that. Me and my family are ready as we're aging.

[00:06:05] Kathleen: they bring  up a good point where there's a lot to think about. And I think in an ideal world, we all act proactively and plan ahead for what's to come. But I think the reality is we just don't do that. We kind of don't face a problem until it's a problem.

[00:06:20] In an ideal world, our clients would be younger and healthy and maybe a newer diagnosis of dementia or Parkinson's where they recognize that their needs are going to change. But The unfortunate reality is that a lot of times we don't plan ahead. So we do have clients that kind of run the spectrum of healthy and independent planning ahead now, in case something happens up until, until a crisis situation, an unexpected fall, unexpected new diagnosis that changes their needs, changes their family's dynamics in the sense that they're going, they recognize the need for help at this point and where.

[00:06:53] Our care coordination can get involved and help them navigate in whichever stage they're at at that point. If they are more healthy and independent, it's looking at what services or supports are available now to help them maintain their independence, stay healthy at home, recognizing risk for falls in the home, home modifications.

[00:07:13] But if they are in a situation where now they're in the hospital or rehab setting, Because of a change in their healthcare, an acute change, we help them figure out what the next steps are beyond that. But I don't think you can really say there's any type of client because we see clients through, through the continuum.

[00:07:30] Chelsea: Since the pandemic, I see people coming in a little bit earlier. When I first started with the firm, it was a lot of crisis planning. It was a lot of mom or dad or grandma, grandpa went to the hospital. They had fallen, they broke their head. They're in rehab now. Now they can't go home. What are we supposed to do?

[00:07:48] That can be tough because then you're kind of scrambling. They never really talked about placement options, children, nieces, nephews, whoever they might be, the person, they may not know the financial information. They may not have power of attorneys. I used to get a lot of that. I still do. Don't get me wrong, but I do see people starting to come a little bit earlier where.

[00:08:09] They're saying mom, dad, whoever is still at home. They're okay, but we just kind of want to know what our options are. We want to start planning for that, or we want to start looking into assisted living, and obviously we want to get people in as early as possible because crisis planning is always a little bit more difficult and we don't love to see people make big life decisions when they're very emotional or when they're in crisis, but then you feel stuck.

[00:08:32] Sometimes the pandemic changed that a lot for people where. They just didn't know what people wanted. People were dying alone. It was scary. Family members were getting calls about big decisions like life sustaining treatment. They didn't know what their loved one wanted. So I have seen a slight shift since then.

[00:08:48] Kathleen: I have kind of changed the, the sense of normalizing conversations around death. It was such a scary time. The last. Three years where you're right, Charles, people were passing away on their own and the families couldn't see. And we hear so much about how social isolation have really affected anybody, but affected the seniors during the pandemic.

[00:09:06] If you can look at anything positive that came out of it, maybe the sense of normalizing conversations about someone would want in that situation is just. More accepted now or more normalized. 

[00:09:17] Jill: Yeah, the pandemic did bring to light for a lot of people that the reality is we can get sick and die suddenly at any point.

[00:09:26] And because it was so in our face during the pandemic, all of us were so worried about it. And I don't think that's a bad thing that that's kind of what was happening because that was happening beforehand. We just did a really good job of avoiding thinking about it. And now we kind of all had to think about it a little bit.

[00:09:45] Kathleen: Didn't matter what age you were, what gender you were, race where everybody was based with the reality of the pandemic and the possibilities of what could happen. So it was kind of a universal conversation that was had. 

[00:09:57] Chelsea: In our society, specifically in the U S I think there is. a huge fear surrounding the idea of death, talking about death.

[00:10:05] But I think it just brought that so to light that people just didn't know what their loved one wanted. They didn't know what they wanted. They were terrified of dying. And of course the pandemic was a very scary thing because it was just happening to anybody and everybody. And it wasn't one particular thing meant you.

[00:10:23] got it and would die. It just didn't really have like a specific demographic that it was targeting, but it brought to light that fear. And that was something that was huge for us as care coordinators that, okay, let's talk about this. Let's talk about why people are afraid. Let's educate on it because I don't think we as a society do a good job talking about.

[00:10:43] Deaf, educating on different resources surrounding deaf, anything like that, really. 

[00:10:48] Kathleen: It's a topic that I feel like we all avoid, but we are all going to be faced with it. It's something we are all going to have to deal with. So why not be a part of our own conversation and make our own needs known and wishes known so that when it comes to a time where decisions have to be made or conversations are had about us passing those.

[00:11:08] Those decisions aren't left to our family. It's such an emotional time at that point that the last thing they're going to want to do or handle is what you would have wanted. And had you just made it clear, it takes a lot of that pressure and emotion and of decision making out of the conversation. 

[00:11:24] Jill: And is that a lot of what Rothkoff does, right?

[00:11:26] As an elder care law firm, it's helping people figure out what they would want, getting it on paper, like all the things that essentially is a death tool. I'm like, y'all need to talk about these things, get it written down, make sure people know. But is that what you do at Rothkoff? It's 

[00:11:43] Kathleen: part of what we do absolutely as part of pre planning or even in a crisis situation, it may include doing their healthcare powers of attorney.

[00:11:51] And in those, at least in our office, we include the advanced directive, which is what they would want their wishes to be in an end of life situation. But that's at least the start to that conversation. It's one thing if you make decisions, but you also want to make sure that your agents know what your wishes are and that Part of the document, they have to carry out what your wishes would be.

[00:12:11] I think oftentimes, because again, it's an emotional decision, we may have adult children or the spouse coming to us and saying, it says my loved one wants this, but I can't imagine losing them. And I don't want to make these decisions in such a pivotal time, but they made that decision already. You're not making the decision.

[00:12:28] They've already outlined it. So it should take that stress and pressure off of the agent to make the healthcare decisions at that point. We as care coordinators might then help them complete the POST form, which is the physician's order for life sustaining treatment. And I think there's often a confusion around an advanced directive as compared to a POST form.

[00:12:47] But even with that advanced directive saying what your wishes would be, the doctor still has to write a medical order so that what your wishes are are then outlined in your medical chart. And whether that be do not resuscitate, do not intubate, that all has to be written up by the physician. Otherwise, that advanced directive.

[00:13:04] really doesn't matter unless those wishes are then made into an official order by the doctor. And that post form is a medical order that once it's completed by the agent or clinically to buy the person themselves and signed by the doctor, it becomes an official medical 

[00:13:18] Chelsea: order. We end up doing a lot of education on.

[00:13:22] Just telling people, like, picking the right agent, picking somebody that you have confidence in is going to carry out what your wishes are and encouraging that conversation between people. Because I can't tell you how many clients I have where, you know, mom and dad have written out what their wishes are, but they just never told anybody.

[00:13:38] So then it's like a shock. 

[00:13:40] Jill: When you were mentioning Kathleen about People don't want to have to make these decisions for their family members while they're in the moment. There's so much guilt too that can come with it where you'll really take the burden off of your loved ones. If you can make these decisions and get it written down, it just can.

[00:13:58] Take off so much of this guilt that somebody would feel if they were the ones having to make the decisions. Even if you think, you know, that you're going to be okay in a situation that you're going to be clear headed and all these other things, chances are you're not going to have any idea how you're going to react until you got there.

[00:14:15] And I know. I like to think that even with all of my thinking and my training, whatever else, that if it came down to something happening to my husband, that I would very clearly be like, no, I know what he wants, but I don't know for sure because when reality hits and I have to make a decision and I'm going to lose him, I don't know how I would do.

[00:14:36] I don't know how I would feel. And so having it all written down and then having somebody come in and be like, look, it is on paper. He did. Say that these are his wishes. Now we're going to make sure that what he wanted 

[00:14:49] Kathleen: is what happens. I think about that with my parents too. Just being in this field, I'll often try to have these conversations and my family is very close.

[00:14:57] My parents are still married. My siblings and I are very close. Everybody gets along. And my mom's response is always, you guys will know what we want to do. And it's like, that, that doesn't answer the question. We might think we know what we would do, but. Just take away the chaos now and handle what your needs are now.

[00:15:13] So that when the time comes, we're just carrying out what your wishes are. Put it in writing because you're right. Like when you're in a state like that, and now it's my mom, it's my dad, my brother, my sister, whatever, what happened is you're so much more emotional. So you don't know what, where your head is going to be at that point too.

[00:15:28] And 

[00:15:29] Jill: if there's three siblings, right? Or you and two more, right? That's three people that are going to have to agree that this is definitely what mom and dad wanted. And that's not always going to be that easy. Even if everybody gets along great now, again, when emotions are high, I've heard siblings say really not nice things to each other.

[00:15:51] And it's just because they're upset and they're stressed and all these emotions are coming up, but take some of that pressure off your loved ones and just talk about these things, get them written down and make sure that everybody is in agreement. Like, yes, this is what we want. Just please make sure that it happens so that people can just be with you.

[00:16:12] at a time, not worrying about talking to doctors and answering questions. They can feel their grief. They can spend what could maybe be your last couple of minutes, last few hours with you, not worrying about all these things that could have been taken care of ahead of 

[00:16:26] Chelsea: time. It's important to note that it is very normal for, we say, have these conversations to take some of the pressure off kids or loved ones making these decisions, right?

[00:16:37] I think It's so important though to normalize the emotions that are surrounding those decisions. And that's why we stress that because there is a lot of fear. There's a lot of guilt. There's so many emotions that surround that and it's normal, but we want to try to help families know that and tell them they don't need to feel guilty.

[00:16:56] If a person has already made this decision, they have this. guilt that they're giving up on them. I've heard so many kids say, I don't want to give up on them, and that's not necessarily the case, but I don't think people talk about the emotions to that. I mean, we already don't talk about death. So why would we talk about the emotions that surround death?

[00:17:12] And you can start to grieve somebody before they're gone. So they're already going through that grief process. So that's why we try to have these conversations ahead of time where it gives them the space to actually grieve, but not have to make hard decisions 

[00:17:26] Jill: as well. Yeah, in our culture, we're not good with emotions, good and bad, really, if you think about it, how uncomfortable do some people get when me included with like, when you get close to people, and even if it's a friend, even if it's not a romantic partner, but like, you love the people, and then you're vulnerable.

[00:17:44] And then that means they can maybe hurt you. We'd like to just stay away from all emotions, good and bad. But Eventually we have to face these things. There's only so long we could stay in a little bubble and not face it. And feeling our emotions is not going to kill us sometimes, even though it feels like it, you know, you could physically feel it in your body if you're stressed and you're upset and you're anxious, but.

[00:18:07] We need to be able to learn to sit with these feelings. And it is just going to feel worse if you wait, honestly. Yes, it's going to be a little bit uncomfortable having the conversation. Maybe you will get sad. Maybe you will cry. My daughter still will sometimes she'll cry if she's like, well, you're going to die one day.

[00:18:23] I'm like, I know I am. And it's okay to feel sad about it. Like there's nothing wrong with that. But if we wait to talk about it until you're in the crisis, and then it's like there, then it's really going to be hard. Then it's really going to be painful. The thing that we've been trying to avoid is going to be even worse.

[00:18:41] And Chelsea, when you became a death rule, why did you decide to add that to your 

[00:18:46] Chelsea: toolkit? It was during the pandemic. And we were seeing a lot of our clients, like I said before, ending up in the hospital or. really just dying alone, whether it be in a facility in the hospital, people were afraid. They were afraid to talk about wishes.

[00:19:01] They were afraid to talk about death, afraid to talk about really just what was happening. And I remember having this feeling of just being not able to help anybody. I didn't know what to do. Say I didn't know how to make things better. I was uncomfortable. They were uncomfortable. We had no answers for anybody.

[00:19:18] I mean, nobody had answers, but people were turning to us and I hadn't felt like that since I was a new social worker that I just didn't know what to say. So surrounding that whole idea of Our clients dying and people being afraid of death or talking about hospice so much more. I wanted to figure out a way to take that next step and help them a little bit further than just, okay, hospice is amazing, but you get them on hospice services.

[00:19:41] And then I felt like we didn't know what to do now. Like we didn't have enough next step to take as the care coordinator in supporting people. So as a firm up virtually, because it was pandemic, we met with two different. End of like duelist. The first one was very, she was wonderful, but she tackled explaining it to us in much more of a spiritual way.

[00:20:04] And I think I had a harder time understanding really what the role was. I don't know if it was because it was so new or I just didn't resonate with like everything she was saying. And so then we met with somebody who was also a hospice nurse. And so I think the way she explained it and the way that I could really understand what she was doing in addition to hospice, like she could explain birth parts and like, this is what I do with hospice.

[00:20:25] This is what I do with this role that I think we all kind of were like, Oh, okay. That makes sense. So I looked into the organization that trained her, which was an elder, the international end of life association. And I remember bringing it up to Kathleen and Catherine was like, yeah, this is cool. Let's figure this out.

[00:20:43] And I brought it to Jerry and Brian and they're the managing attorneys, Jerry's and New Jersey. Brian's in Pennsylvania. I remember bringing it to them. We were like, what is this? Like, what do you want to do? And ultimately after a few conversations, they're like, yeah, sure. You want to take this training?

[00:21:00] Go ahead. And I did. And it was almost like taking two months of a college course, like three days a week. It was virtual. It was very cool experience because there's people from all over the world. I remember sitting there all day and being like exhausted and just talking about death. And it was, it was an amazing experience.

[00:21:18] It was very profound for me. It was emotional. It was all of the things you could feel. I felt them. It was also a very special experience for me because I was pregnant at the time. I was about six months pregnant and we had to really do a lot of role play and put yourself into the role of, okay, you're going to be.

[00:21:37] with your partner or one of you is going to be the doula and one of you is going to be the dying person. So take a few minutes to think like, how would you really feel? And I mean, Jill, you know, you have kids like pregnancy hormones. I was like, Oh my God, if I'm dying and I'm having this baby, like it was very profound for me because.

[00:21:55] I had to then think about what does that mean for my family? What does that mean for my husband who would then be alone? What does that mean for my daughter who I might not know? And those are real feelings people have. So it was really a great experience for me because I felt like I could put myself in that position.

[00:22:11] And we also got to get so many different life experiences through a virtual platform. We had people all over the world. My main partner that I did the role plays with was in Russia. We did a whole role play about talking about like religion and spirituality. And it's just such different experiences that we've had in our life.

[00:22:29] I was raised Catholic. She couldn't even have religion until she was an adult. So just to talk about those different experiences and learn about how people and other. Cultures, other countries, whatever the case may be, like the way they look at death and how they want to approach death because it's a universal thing, like also just how many people want to help people who are dying, take back a little control or just have like a voice in their journey.

[00:22:55] And have someone there to listen to them. So I finished the course. It, I loved it. I remember in the beginning I had a very hard time because as a care coordinator, we're supposed to give advice. Like people come to us and we say, this is what I think you should do. You don't have to, but this is what you should do.

[00:23:14] And they do it. So then to switch roles and be in the end of life and them say, you cannot give advice. I was like, That's what I do. I give advice. What do you mean? I've been a social worker for a million years and like I'm a care coordinator. I give advice. That was my biggest struggle is learning how to really just hear people and on hold space for different emotions, different experiences, but it's all about practice.

[00:23:39] And I think that it's something that we really have all tried to work on too, that it's a great skill set to have. So then I went through the training, I completed that. And my daughter came a little early, surprised us all. I was out for a while, but once I came back from maternity leave, I remember saying to Kathleen, like, all right, how are we going to do this?

[00:23:57] Let's get this figured out. Let's figure out how we're going to incorporate it with the firm. Cause we just thought it was so important to have this to not feel like we cut to stop. at a certain point that we couldn't give anymore. And it, it took a lot of talking about the role educating on what it could offer people with Jerry and Brian, the managing attorneys, but we figured out a way that we were going to, we were going to do this and we were going to offer it to people.

[00:24:23] And we're so thankful to you, Joe, for allowing us to figure it out. Cause it took us a while. We wanted to have. Uh, a way to offer it to every client and we're excited to be able to do that. I myself, now that I have the training, I still have my role as a care coordinator. I still want to get some more experience.

[00:24:41] So I feel like I can fully help our clients. So I'm actually also trying to become a hospice volunteer so I can get some more of that one on one time with people and experience more of what people go through. A lot of my experience with end of life is in facilities, which is very different than if you're at home.

[00:24:58] Or even in assisted living, which is an apartment. It's almost kind of like a private apartment. So that's kind of how we, we came to wanting to 

[00:25:06] do 

[00:25:06] Kathleen: all of this and I was so excited. I heard of a death tool, but when Chelsea talked about it more, I got a better understanding of it. We, in our offices, we talked about C clients through the whole continuum.

[00:25:17] So we're seeing individuals who are healthy at home up until their end of life. We're pointing them in directions and hospice being one of them. We are the biggest proponents of hospice and it's such a great support. And we felt like we were doing our due diligence, of course, by sharing that resource with our clients.

[00:25:33] But we as an office kind of stopped there and then we would help with the estate planning after the individual's passing. So it did feel like there was this. Like missing block, like what is our role within this timeframe when they're getting the support of hospice? And that's why I feel like the Death Villa role in that capacity adds so much more to what we're able to do.

[00:25:53] And Chelsea, you bring up such a good point with the pandemic in that we didn't have answers. Nobody had answers. It's inspiring to hear your journey to get here was because you were looking for a way to give some type of answer. The Death Villa brings the support to the families in such a vulnerable time that they're going through to give them some kind of peace of mind to allow them to be in that emotional state.

[00:26:16] Like it's okay to grieve and it's okay to have these feelings. And just to note 

[00:26:19] Chelsea: too, we talk about hospice, we recommend hospice, but hospice is funded by Medicare. But because they're funded through Medicare, they have to meet certain criteria. Like somebody has to meet a certain level of criteria to qualify for hospice.

[00:26:34] And of course, there is palliative care out there, which is also amazing because a lot of companies will have both. And then it's like an easy transition, but. I think it's so nice to when you are trained as an end of life doula, because, because it's not funded through an insurance like that, you don't have to meet criteria.

[00:26:53] Like as long as somebody has a terminal diagnosis and they're willing to do the work, or if they want to do the work in regards to someone who has a terminal diagnosis, it's like a family member coming and end of life tool can get involved and then hopefully recommend hospice sooner. Cause one of the issues is a lot of times they get involved.

[00:27:10] Hospice is a wonderful resource for the dying person and for their families, loved ones, whatever the case may be. And a lot of times the hospice companies aren't even getting there until like the end when people feel like they finally can accept the person is dying. If you're already doing the work with an end of life Zula, A lot of times they can identify like, hey, listen, you already told me you don't want to do this aggressive treatment and you've had these medical declines in these areas.

[00:27:36] You would probably qualify or it would be worth looking into this as a resource. And then you can get X, Y, and Z. You can get some medications covered. You can get some equipment covered if needed. We love hospice and it's just an addition to, and hopefully they get that benefit for people sooner. Cause I think hospice companies sometimes get a little nervous about an end of life doula because they don't want to feel like their toes are getting stepped on.

[00:28:00] And honestly, hospice gets such a bad rap. Like they're a wonderful, wonderful service, but people look at it so negatively because hospice means you're dying. It doesn't actually mean that, but I think hospice companies, rightfully so get a little defensive. So I think that's a huge benefit too, with us being.

[00:28:17] care coordinators and having these medical backgrounds. We can explain it to them in a way too, where we're just, we're all working together. Like we're all a team here because they do get it. I've had a few hospice companies and like friends with hospice companies be like, I don't get this role. Like, are you trying to replace us?

[00:28:33] I'm like, no. Absolutely not. And you 

[00:28:35] Kathleen: brought up a good point to Chels with your training where you were partnered with someone who was in Russia, because I think oftentimes, whether it be religious differences, cultural differences, people view death differently. And when you're a death, you're kind of going in with an unbiased opinion, not putting your own personal biases out there.

[00:28:54] It's their decision there. It's their journey and you're giving them and empowering the individual to make the choices that they want to make and just supporting them and whatever that looks like, whether it be insurance or something else, your role isn't dictated by something else. It's more patient driven or client driven than it is.

[00:29:10] insurance driven, religious driven, whatever their 

[00:29:12] Jill: journey is. There is some people that talk about like, oh, maybe eventually doulas will be covered by insurance. There's pros and cons to all things. I know it's hard because it's not like I have clients beating down my door for a million different reasons.

[00:29:28] But I know part of that is also that they say, well, I can get hospice for free and get the same thing where I have to pay you out of pocket. And I know that can be a challenge for people, but also I know that once you start taking insurance, then you really have to start a lot of processes that take away from actually providing the care that people want and need.

[00:29:52] It's almost like this is like the concierge service where it really is just completely focused on the client and I don't have to worry about. All these other things. So there is positive and negative to both of those, but it isn't a competition to hospice. I was really surprised that when I started going to like networking events and talking to people that work in elder care, there's still a lot of fear about death.

[00:30:18] Even with people that work with the aging population and people that are dying, I still got a lot of the like, Oh, wow, what do you do, and a lot of having to explain what death doulas are, because people really don't know that we exist, they don't really understand what we do. And sometimes it is even hard for me to explain what I do, because it is still kind of new.

[00:30:43] Where I'm even figuring out all the different little places that I can help people and where I want to kind of focus my energies on. It should be interesting over the next five to ten years. It's gonna hopefully be something that people will really start embracing and that's why I know like Rothkopf does a lot of education around all different kinds of topics and I know Chelsea you've been doing some educating about death doulas and it's important.

[00:31:09] Part of the work that we have to do is just educating. The population to understand that we are all going to die. And there is also help out there. And so I'm excited that you are one of the first law offices that I've talked to, that's really trying to embrace it. But again, I was even kind of surprised.

[00:31:27] I was like, wait, what do you mean you work with people that are dying, but. It did seem like there was that gap. And actually one of the networking events, I was talking with a law office, not yours and somebody from hospice. And they said kind of something along the lines of like, I think death rulers might be the bridge.

[00:31:46] For the gap that we've known is there, we just haven't been able to figure out what to do with that. And I was like, Oh, well, that's cool. I think that's good to hear. So it does seem like you're one of the first law offices. That's really like, okay, there is this gap. How do we fill it? How do we fix it? And bringing in some death doula help is.

[00:32:04] exciting. And I think it is going to benefit the clients. It's not just about like me being like, Oh, but now I work for a law office. I do genuinely think it's going to help your clients. I think it's going to help them kind of get to a place that we're all going to get to a little bit more comfortably.

[00:32:20] Kathleen: Even with our roles, Jerry started with a social worker 25 years ago, and I think even to this day, here we are 25 years later, I still get questions like, what is a care coordinator? What is a social worker doing in a law firm? It's opportunities for education where maybe in 5, 10, hopefully not 25 years later, this is more of a normal conversation.

[00:32:41] And then it's understood because to us internally, it makes sense. Why wouldn't there be, but it just is a matter of education. And that's why, like you said, we tried to do a lot of educational opportunities so that people can understand the benefits of a death law. And it's one of those things that. Once you hear something, you see it everywhere.

[00:32:58] And I swear since Chelsea introduced it to me, there's articles written about it and you see 

[00:33:03] Jill: blogs written about it outside of our 

[00:33:04] Kathleen: firm, but it's everywhere now and it's being more and more accepted and that, that excites me. 

[00:33:10] Jill: You're right. Now there's like articles and blogs and podcasts. It is all over.

[00:33:15] Which is good. And then I also have a lot of people that contact me and they're like, I want to become a death doula. Can you talk to me? And then as we talk, they're like, wait, you don't make any money. I'm like, not yet. Don't know. It's also, I think like a lot of things, I know death doulas that I've done the training and they started the work and then they're like, actually, I don't really like this.

[00:33:34] And so now they're kind of finding that maybe They only will work with grief or maybe they'll only work with little segments that kind of have to do with it. But the actual working with people that are actively dying, they don't like it. And when I started going into the hospital and I started sitting with people that were actively dying, I was like, Oh, this could be really boring.

[00:33:55] And I don't mean that in like the way of like, Oh, I'm so bored. I want to do something else, but like, you can't do something else. You're just sitting and it has to be a practice of. Allowing yourself to just sit and not occupy your brain, which is what we all want to do. We're so used to being on phones now and computers and having all this stuff.

[00:34:15] And when somebody is dying, you're just sitting there and you're holding the space with them. So there is this kind of. Adjustment you would have to make, but I find it to be a very special time to be able to be with somebody in those 

[00:34:28] Kathleen: moments. Our generation is exploring more holistic options when it comes to medicines where I think to the older generation, you know what the doctor says.

[00:34:37] rules, you follow your doctor's orders. And now you see more and more people questioning or getting a second opinion or exploring more holistic treatment options. So maybe just with generational changes, you might see that this is more widely accepted too. 

[00:34:51] Chelsea: It also bridges the gap for us that way too, right?

[00:34:54] Because obviously healthcare is so clinical. It's so clinical. And there's a lot of different things that people are starting to get into, like different supplements or essential oils, things like that, that you don't really see in assisted living. Things are still heavily regulated in long term care. I remember a client's daughter asking me, how do I get my mom to take These supplements, I'm like, it still has to go through the doctor.

[00:35:17] That's how it is. Whereas I think our, as our generation is getting older, you're seeing like way more holistic thing, wanting to have the opportunity for that. And it's nice that we kind of have that now. And then also what you were saying, Joe, a lot of, just going back to the education piece, like it is the education piece, I think is my biggest hurdle right now.

[00:35:37] Obviously I did the training and I'm like, let's do this. I'm ready. And then you mentioned it to a client or a professional partner. And I like saying Deaf Dulux, I like to shock people. I'm like, yeah, I'm a deaf. And they're like, 

[00:35:47] Kathleen: what? Even that term alone seems so shocking to hear, but that's how it should be because we dance around too much.

[00:35:54] We don't address things. You know what I mean? 

[00:35:56] Chelsea: And nobody even wants to say like, They died. Right. People like are shocked when you say so and so died. I mean, they did, but everything about death, we try to make as soft and delicate as possible, which is fine. Right. Because when people are grieving, sometimes to say things in a certain way makes a difference, but everybody always says like, Oh, they passed away.

[00:36:16] But if you hear somebody say they died or they're dying, people don't like that. But. Why are you uncomfortable? That's always like my thing. Why are you afraid of dying? Like, tell me, I'm really interested. Just because I'm deaf doesn't mean I'm not afraid to die, but I think because I'm talking about it, I'm creating a healthier relationship with it.

[00:36:34] And that's my goal for myself and for other people. If you can create a healthier relationship with the idea of death, I think we can do more in regards to death planning. It's not easy for me to always talk about death, especially because I have a baby, especially because I want to be around and be in her life.

[00:36:52] But in thinking about death, it sometimes helps me in those moments where you're trying to make dinner. She's clinging to my hips, screaming and crying. And I just want it. scream and be like, everyone get away from me. Like the dog has to go out for a walk. My husband's trying to talk to me. I'm like, everyone, leave me alone, get away from me.

[00:37:09] But because I think about it more, so sometimes I just kind of take a deep breath, turn off the stove, pick her up, sit on the couch and like, you know what? We can have dinner a little bit later tonight. And I think even if talking about death helps you just live a little bit more in your present life.

[00:37:24] That's huge. How many people look back on things and regret that they weren't more present? And obviously I can't be present all the time. I can't stop everything I'm doing every time my daughter cries. But in those few times I can do it, it makes a difference in everyone's life. So I think just creating that healthier relationship is so important.

[00:37:44] It doesn't mean you're not afraid to die, doesn't mean you don't have fears about what that will, what it'll look like, what will happen, will it hurt, what comes next, but at least if we can start talking about it, it can help us as a whole in 

[00:37:55] Kathleen: society. Far too often when after someone passes away is when we start to, of course, after the grieving process, talk about how wonderful of a person you are, start remembering.

[00:38:06] And while that's still important, I think we shouldn't lose sight of doing that while the person is still alive. Embracing them and telling them how meaningful they are to you while they're still alive versus waiting until it's too late. Because then I feel like it's, you're going to live with those regrets too.

[00:38:20] Having not been able to express how someone makes you feel or how you felt about a situation, whatever it may be. But I think we wait too long versus if we address and accept that death is going to happen with all of us, it'll help us embrace them while they're here a little bit 

[00:38:34] Jill: more. That's something that I've noticed as well.

[00:38:36] Like, just like Chelsea said of really appreciate things in life, even the hard parts. And yes, sometimes my children drive me crazy, but I have a different sense of, but I'm here and they're here and let's just be together. And the telling people, I'm not going to wait until it's too late to tell people that I appreciate them and I love them.

[00:38:58] It doesn't mean that we want it to happen either. You know, the fact that I can know that my husband might die. He just got in his car and drove away. I just heard him. There's part of me that's like, he could die in a car accident. It doesn't mean that I want it to happen. It doesn't mean that I'd even be okay if it happened.

[00:39:12] But the reality is. That knowing that that happens all the time when he does leave the house, I always say, I love you whenever I can. Obviously right now I couldn't, but I know that every other time I did. So I'm not going to have that regret. I'm not going to have that. Oh my gosh, she left. And I was upset with him.

[00:39:30] I want to die. Not feeling like I didn't say things because I was. upset or afraid of being vulnerable, afraid of saying to somebody, I really appreciate you. I really love you. And having them be like, well, that's weird. Okay. Maybe it's weird, but you know what? I was feeling it. I was thinking it. And if I didn't say it and then they died, I would always wonder like, well, I really wish I would have said that because it changes your life.

[00:39:56] I think that is one of the things. That I try to talk about a lot is how much becoming a death ruler has changed the way that I experience living life, because that to me is a gift. I did not experience it this way beforehand. When I 

[00:40:14] Chelsea: was having a lot of those emotions. Pregnant and going through the course.

[00:40:17] I was like, Oh my God, I could die at any time. What if I die? Like, she'll never know. I loved her. So there are things you can do too. Like I started a journal for her and I write for entries all the time. There's little things you can also do for yourself. I think it was more for me, really, when I talk about.

[00:40:33] Being an end of life tool, legacy projects are my favorite thing to talk about and families who aren't quite ready to do that kind of work and really talk and think about death. I'll even just bring up legacy projects too. I bring it up a lot, actually, for people who have a loved one with dementia, which is hard because right, you hear dementia is the longest goodbye, and it is.

[00:40:52] My grandfather had Alzheimer's for years and my poor grandmother, they live in Maryland and a continuing care retirement center. He just passed away a few months ago, but For years, she, she was just watching this man she was married to since she was in her 20s, kind of like slipped. And it's, it's hard.

[00:41:10] It's really, really hard. But you can do things with somebody before they don't remember before they can't communicate or before they can't remember everything. Recipe books, or the books you can fill out like grandfather to the grandchildren and things like that, or just write letters, or my grandparents actually did complete one of those.

[00:41:31] Books for my siblings, because I have siblings who are a lot younger than me. When they were born, they didn't know how long they were going to be around. So they filled out these whole books about their life and gave it to my step mom. So if they weren't around to really remember my siblings, to remember them, they could know who they were as a person.

[00:41:48] So I think things like that are beautiful too. It's still thinking about death, but I think it's also. gives you that ability to leave something for somebody. Those types of things could be a healthy way to start for people who are a little nervous of thinking or talking about that. You can start doing these things with your loved ones and feel like you're leaving something behind.

[00:42:06] They're not going to forget you. They're going to remember you or you can leave a message for someone. You can write them a letter and tell them you love them. So you don't have that fear anymore. They won't know. 

[00:42:15] Jill: There's a lot of things that we can start doing at any stage of life to just help prepare us, help prepare our family members, and hopefully leave behind something that lets people know who we are.

[00:42:28] Because I think we take that for granted sometimes, or I lived a whole life. I was 32 when I had my first child. I lived a whole life. Before I had my children and I know that life, but they don't know that version of me. Even sometimes I'll talk about the bakery and I'll forget that my children were not there.

[00:42:47] My son was there, but he was little, right? That was such a huge part of my life. And they didn't experience any of that to them. It's just this like vague story with maybe a couple of pictures floating around. But to me. That's a huge segment of my life and there's probably so many things that I'm not necessarily telling them.

[00:43:07] So writing things down and telling these stories and writing the letters and the journals and because hopefully I'm not going to die anytime soon. Hopefully I'll be 96 when I die, but also why not start it now? It doesn't 

[00:43:19] Chelsea: hurt to start it. And you might put something in there that if you're talking about stories about the bakery, if you are 90, you might not remember one of these really important moments that.

[00:43:30] You might remember right now, write it down now, and then it's there. The nice part too about creating that healthy relationship with talking about death is, it's not set in stone what you want. I find as different things happen in my life, what I would want would change too. My daughter's only 18 months.

[00:43:47] My thoughts have totally changed about what I would want if I were actively dying right now. I would have told you when I was pregnant with her, I would want to die at home and I'd be want to want to be surrounded by my family. Now I think about it. I wouldn't want to die at home because I don't want her that to be her memory of me and her feeling of our home is I died there.

[00:44:07] And that's obviously not the same way everyone feels. It's up to every family's comfortability, but I wouldn't want that heaviness on her being so young and having to grow up like that. You, 

[00:44:18] Kathleen: you raise a great point. Chell said it's not static and it's something that again, making it a normal conversation makes it easier for your opinion for yourself and what you want your deck to look like can evolve.

[00:44:30] And it just. Makes the conversation continue. It's not like you have it once and then you're done. You've made your needs known. It's going to change. It's going to involve. And so make sure the people that are included, whether it be your family or your friends, know what you want so that they know what your goals for your death look like.

[00:44:45] You're also hearing their stories and making it normal for them to share their journey with you. 

[00:44:51] Jill: All right. We're coming up on time. Is there any last things that you want to share with anybody? 

[00:44:58] Chelsea: I think this is a great discussion. Thank you. And thank you for doing this podcast. I mean, I know I tell you all the time that I love your podcast.

[00:45:04] I love the conversation that they really make you think about these types of things. And they also give you that experience of hearing different people's experiences, their thoughts. I mean, a lot of what I've heard on this podcast has influenced my thoughts about even my own death. So I think everything you're doing and spreading awareness and educating on the topic, everything we're trying to do on educating on the topic, I think we will start to see people really understanding it a little bit better and becoming hopefully more comfortable talking about it.

[00:45:36] Whatever we can all do to make that conversation more of a norm. I think it's going to benefit us in the long run. 

[00:45:42] Kathleen: I agree. Thank you for utilizing this platform to make it a more normal conversation and bringing awareness to it. I appreciate the both of you for what you do. And for carrying out with such a great service that a death bill can provide.

[00:45:55] Jill: Thank you for being here today. I appreciate both of you so much. In next week's episode, we explore the evolution of end of life care with Barbara Karns, the godmother of modern day hospice. We talk about the important role of end of life Dolas, and how Barbara envisions their integration into hospice and end of life care settings.

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[00:46:58] Thank you and I look forward to seeing you in next week's episode of seeing. Death clearly.