Episode 79: Your Final Milestone

Meghan J. Mahr, End of Life Doula

The Dartmouth Dementia Directive
Dementia Values and Priorities Tool

 
Five Wishes Advance Planning Tool

Hard Choices for Loving People

Being Mortal

www.FloridaFiveChallenge.com

Support the Alzheimer's & Dementia Resource Center 

Transcript

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Robin: Welcome to Informed Aging, a podcast about health. Help. and hard decisions for older adults. I'm Robin Roundtree, a former family caregiver. I've worked in the home care industry and now I work for the Alzheimer's and Dementia Resource Center. With me is my co host. 
Edith: Hi, I'm Edith Gendron, Executive Director of the Alzheimer's and Dementia Resource Center.
I have over 40 years of experience working with adults, primarily elders in aging services. 
Robin: Now the thoughts and opinions expressed belong to Edith and I, not our wonderful employers and sponsors. This podcast is a service of the Alzheimer's and Dementia Resource Center. We are not affiliated with the Alzheimer's Association.
Before making any significant changes in your life or your person's life, please consult your own experts. You know, we talk about making hard decisions on this podcast, and to help us with those hard decisions, we've got a job I didn't even know existed a month ago. [00:01:00] We're going to be talking to Meg, who is an end of life doula.
Stay tuned.
And we're back and we're talking with Meg Marr, who is an end of life doula.
And I heard that, I'm like, what? So she's going to answer that question for us. Now, what is the name of your company, Meg? 
Meg: So, the name of my company is Megan J. Marr End of Life Doula. Okay. So, it's my name and End of Life Doula makes it very easy to find. 
Robin: Okay. And what exactly is an end of life doula? I've heard of a birth doula, which is a job I would not do.
But end of life Tula. So you're on the other end of the spectrum. 
Meg: Yes. I'm at the other end of, you know, life's important threshold. And what I do is I offer non medical support to an individual who is dying and their family members. , It [00:02:00] looks like compassionate, nonjudgmental support, which includes emotional, spiritual, practical, logistical things, and educational guidance that's really tailored to each person and their family.
Robin: And I'm assuming this is usually in the case of like a terminal illness, when you know the death is coming. And you need some help planning for that. 
Meg: Yes, that is, that is correct. It is usually in the event of a terminal illness. Ideally, I can get involved with a family at any time, and I like to say the earlier the better, because there's things that I support with and help do that really should be done at any time in our lives as an as adults, but yes Absolutely the time that I'm intimately involved is once somebody has received a terminal [00:03:00] diagnosis 
Edith: I have the hundred thousand dollar question. 
Meg: I love it. 
Edith: Are you ready? What's the difference between a death doula what you do and what hospice does? 
Meg: That is such a great question
and I Love being able to talk about that. I think end of life doulas and hospice, we really complement each other and work together to support someone and their families. Hospice is a Medicare reimbursed medical provider, so they are bound to the regulations of Medicare. They have nurses, and they have a physician, and a social worker, and they provide
provide holistic care to support the person in, oftentimes, in the comfort of their home . , the hospice nurses, usually see somebody once a week and they often will have many [00:04:00] patients, so their time available to a patient and their families is kind of minimal.
So, that's an area that an end of life doula can supplement. We aren't under Medicare regulations, so we have the gift of time 
Robin: available to us. Okay, so hospice is medical, paid for by Medicare, and you are non medical. Correct. Um, and you would think, Um, dying doesn't require all of this work, but if you want to go peacefully, then yeah, you do need to plan for it.
Edith: Meaningfully, right? Yes. Like we say all the time, you only get to do it once. 
Robin: Right. Right. So do you want doctors to make every available effort? To keep you alive which some people are like, keep me breathing as long as I can. Yes. , and we respect any choice that you make, [00:05:00] especially if you write it down.
Meg: Exactly. Any choice is a welcome and respected choice as long as it's been made thoughtfully and like, with intention.. Something that somebody, yes, this is what I want and I'm documenting it. Right. 
Robin: And education too. I think people, uh, need to know what that may look like. 
Edith: Well, when you have a, a person who's graceful and understanding and understands all the nuances and the complexities like Meg, then you also have someone who is there just for you.
And you had that first implied trust, but then earned trust, right? Where you can say things like, okay, my mom doesn't want CPR, but I know that I'm going to have a hard time saying don't do CPR every time she codes. And then I would expect that Meg would say, let's, let's unpack that. Let's talk about that.
Yes. Work on 
Robin: that. Yes. And that is [00:06:00] tough. I've seen a lot of adult children. They're like, I can't let her go. It's like, well, quality of life is something that has to come in just because she's there and breathing with the assistance of a machine. Is she really there? 
Edith: Atul Gawande, right? Right. Atul Gawande's sense of well being.
What is your sense of well being? What matters to you? And if what matters to you can't be achieved, 
Meg: Then, right, why are we doing this? 
Edith: Right, why are we continuing to, you know, use the term, um, life support? Kind of annoys me. It's like, what are you supporting again? Someone far smarter than me once said, shouldn't it be more like allow natural death?
It's like, I like that idea. Yeah. But you said something and it made me think of this question, please. we know that hospices are regulated. Lots and lots and lots of things are regulated. Talk to me about being a death doula. Do you have to get licensed or certified or what regulations do you have to comply with?
[00:07:00] How does that work? 
Meg: Such a great question. So right now, the end of life doula, death doula industry is not officially regulated. There is no required licensure. There is, , trainings that can be done, which I have done. I did my training through the University of Vermont Medical School. So there are trainings that can be done.
You receive, a graduation certificate from that, but there is no required licensure or required certification or anything like that. There is a scope of practice that should be adhered to. That in the best cases it is adhered to. Absolutely. So there is a scope of practice for every end of life doula to follow, but there's no external framework regulating that.
Edith: So it's important, yes, to know who you're working with and what your professional reputation is and you know, I'm [00:08:00] not saying Google reviews five star, but maybe I am, you know, I mean, and I would imagine that given that it's kind of in its infancy that people like yourself and I know one other person who is , Educated in the, kind of in the manner you've described, right, has good, resources behind them. Um, kind of look out for the profession and say things like, well, you know, um, hey Edith, you're calling yourself a death doula, but you are not doing that scope of practice. 
Meg: Yes, very much so. That is something.
. Very important to, to me personally in this work and many doula colleagues that I know the upholding the integrity of this profession really falls to each one of us to do our part and do you know what is within our scope of practice and not do the things that are not within our scope of practice.
Edith: Yeah. Yeah. So what are some of the things [00:09:00] you've done for people? 
Meg: So one of the big things that I do with people is I help them complete their advance directives or I help them go into more detail if they've maybe already completed them with an attorney or through Five Wishes. I will talk through, , Some extra specifics about it, or I will just help them complete the entire thing.
So, talking through things specific to healthcare and treatment options, not wills and estates and all those, right? Right, right, right. Talking through what kind of treatment they would or wouldn't want. And choices about that can be made beyond just, do you want CPR or do you not want CPR?
There's other things that can be decided. So making those kinds of choices. And then, who do you want to make your decisions for you? Or really, I like to think of it as, who do you want to carry out the decisions [00:10:00] that you've already made? Who do you want to be your healthcare surrogate or medical power of attorney?
There's a bunch of different names that they all kind of mean the same thing, right? Mm-hmm . Who's your person, right? Who's your person, right? Who's 
Edith: your person, right? 
Meg: And a lot of people will, think it should be my closest, my closest person, maybe my spouse, maybe my, adult child, and many times that that is a great person to be your health care surrogate, but sometimes it might not be. Exactly like you said, Robin, sometimes a person can really struggle with being able to carry out an individual's wishes. So maybe it's not the right person or it is, but let's talk about it. We, you know, we do the advanced directives, everything is documented, which is so important.
Equally important is the conversations that are had [00:11:00] after that. 
Edith: Yeah.
Robin: And again, we always stress, write it down. I was thinking today, how hard it is to figure out what gift to get someone. 
Edith: Isn't it? A 
Robin: present that would bring them joy. If that's hard to figure out, put yourself in the shoes of somebody going, how do they want to die?
Edith: Right. Right. So. What do they want present? Right. And you know, we, we. We'll We talk about having the spouse or the adult child, but in my married into family, in my in law family, I saw where that, caused a lot of heartache, you know, the, I can't let go thing. Yeah. And I, I personally feel that someone was treated for longer than proved to be good for that person because somebody just couldn't let go.
And then when they finally did, other people were like, well, you gave up. It's like, there was, so we needed you. We didn't know [00:12:00] you. That would have been like, what, 25 years ago. It's such 
Meg: a common scenario that happens that it. It's just, it's so hard to let go and then maybe layer onto that advanced directive choices that aren't very clear.
Maybe they're a little vague. Maybe there's not really anything in there other than CPR. Right. 
Edith: Or again, , we have a family member who's been correctly down the Certified Elder Law Attorney and has all the paperwork, but then after everything was written and said and done and la la la, talked to another person in the family who happens to be an attorney and said, well, I know what I said, but what I really want you to do is this, this, and this.
And my comment was, if it's not in writing, we're sticking with what you put in writing. 
Robin: Yes. Yes. Yes. Oh, what a mess. What a mess. Yeah. So, do you advise, when you're choosing the [00:13:00] person to make your decisions, to say, Are you comfortable with these decisions I've written down? Would that be a good step?
Absolutely. 
Meg: Absolutely. I think that is a great part of that conversation. And that's something that I help with. Cause These are hard conversations to have. Our society doesn't like to talk about this. No, gosh no. No, I know. So that is something I help with. I facilitate those kinds of meetings or I've even helped family members by just giving like little scripts and talking points of here's how you could start the conversation.
But I think, yes, compassionately and directly asking, are you comfortable in this and like releasing the pressure and expectation of because you're going to do it, you're, you're it, you know, 
Edith: Can you carry out my wish? Right. For [00:14:00] me, that was a very direct, straightforward question to my oldest child, who is also a nurse practitioner.
So it's like, listen, 
Edith (2): Yeah, 
Edith: I know, you know, And she's wonderful at what she does. She truly, truly is. But I'm not asking for your medical expertise. Right. I'm asking for you to listen to your mama. 
Meg: Yes. When 
Edith: she says, if this, then that. Right. End of story. 
Meg: Yeah. Can you 
Robin: carry that out? Yes. Yes. That's a tough question.
It is. But, good to have. Mm hmm. And it's just, I'm amazed that if somebody announces, I'm pregnant . The bombardment that they get with advice and stories and which hospital and who's your doctor and what 
Edith: color and yeah, are you doing 
Robin: this? Are you doing that? Uh, the birth plan, weeks put into that, but our death plan, 
Edith: , birth plan.
Yes. That was news to me. I'm like, there's, you can have a plan. Right. Go with the body. No, no, there's 
Meg: a plans [00:15:00] now. I want 
Edith: purple, I want purple lollipops, or it's like, okay, gee, I missed out on all that fun. But no, you know, and I was thinking when you were talking, uh, Meg, that, you know, we plan down to the type of napkin for weddings.
Yes. And we talk about them. We talk about the babies. We talk about graduations. 
Robin: Yes. 
Edith: Leaving this world should be as important. 
Meg: Yeah. Right? Yeah. . It is. It's truly. It's as big as birth. It is. Yeah. You know. 
Edith: It's our exit. But you only get to do it once. Right. It's our 
Meg: exit from, you know, the physical planet and we don't approach it and treat it with the reverence that we.
, give to so many other milestones across the lifetime. 
Robin: That's a good point. Now I gotta think about the napkins I need at my celebration of life. What color? What color? Would you like a [00:16:00] little phrase on that? Yes, I would. 
Edith: Robin was here. I'm fabulous. Fabulous. 
Robin: Yes. I'm still fabulous. That's right.
Just in a different realm. Yes. Yes. So if someone's interested in your services, how does that work? 
Meg: They can contact me through my website and social media, and, we have a phone call or a zoom call to get to know each other. And I can learn more about them or their special person. A lot of times I'm initially approached by , a child, a spouse, a well family member.
So I can get to know them and hear what their needs are and see how I can support them and then tell them about my services and what I can do for them. And then we 
Robin: go from there. Okay. Do you kind of have a menu? Like, I just need help with my advanced directives and I should be good. So you can just do that.
Meg: Yes, yes, it's, [00:17:00] I just, I try to keep it simple and I just have a straight hourly rate rather than a package or something so that way people aren't paying for things that they don't need. So if it's just advanced directives, then we do advanced directives. If that's all done and you just need support with a Preparing for vigil or the logistics of moving into a different facility.
Then I'm there for that. 
Edith: Can you find a piper? 
Meg: Probably. I'm pretty 
Robin: resourceful. Yes. Yes. And what got you into this field? There's gotta be a story there. 
Meg: There, there is a story. I don't think any of us in this work. thought I'm gonna be an end of life doula, right? So so my mom died almost eight years ago And it was the experience of losing her that kind of propelled me into this work [00:18:00] We did not have an end of life doula.
I had no idea about end of life doulas in 2017 but I Started volunteering at hospice and then through that volunteer work. I learned about end of life doulas and it was a whole body Yes, this is my 
Edith: yeah Sometimes things just ring right in what I call our soul.
Yep. 
Robin: I'm going to circle back to advanced directives because you pointed out something that I didn't know, , that they do have attachments directives specifically for a dementia diagnosis.
Yes. It's kind of like an add on and I'm like, huh, Edith probably knew, but I didn't know. It's okay. 
Edith: You learn something new every day. 
Robin: That's right. You, you sent two of them to me. So are these available on the internet? They are available 
Meg: on the internet. Yes. For, for free. There are two different dementia directive add [00:19:00] ons or addendums.
One is called the Dartmouth Dementia Directive and the other is called the Dementia Values and Priorities Tool. It's from Compassion and Choices. And yes, these are both considered a supplement to the rest of somebody's advanced directives. And they really focus in on dementia. related concerns 
Robin: and choices.
Okay. All right. So we will have links to this in our show notes if you're interested, but what kind of things, um, I. need that's not in my advanced directive for this. So each, 
Meg: each directive kind of approaches it a little differently. , the Dartmouth directive asks lots of questions and then you make your choices based on when you have mild dementia, middle dementia, or late dementia.
So maybe your choices on what kind of care you want or don't want [00:20:00] change depending on where you are. are in your, dementia journey. 
Robin: So if you're just pleasantly confused, that may be a different decision than, you're not sure where you are. Right. You don't know what age you are, very confused and not able to do much, , that may be a different answer.
Right. 
Edith: World processing has changed. 
Meg: Yes. That might be a different answer. might be at that point, you Would desire to be able to die a natural death. So if you're getting spoon fed food, because maybe in this scenario, at that point, you're no longer feeding yourself. You're getting spoon fed food. Maybe that's not what you want anymore.
And you want to be able to just like die a natural death, but early dementia, that's completely different. You know, you're. Where you are as a whole [00:21:00] person and your life is very different. So those are the kinds of things that you can designate. I think the most important thing with both of them, well, really any advanced directive is you want to be filling them out and completing them when you have cognitive abilities, when you have full decisional capacity.
Somebody can't fill out the, directives on your behalf. You've got to do it yourself, so do it early. 
Edith: Do it early and, but then go back and where applicable, where possible, update, right? So maybe, you know, maybe when I did it five years ago, um, but something might change. And it doesn't always have to be a terminal disease, right?
Something might change and you might think, okay, maybe I don't want, If this, then that. Right. 
Robin: Yes. I know. Seeing somebody with a feeding tube, just that image has stuck with [00:22:00] me and, and it's It's I didn't love that the doctor said it's just going to be for a few days. Maybe they were very optimistic, but like that's something I need to have written out like you get a five day max and then you're going to pull the plug on that or not at all.
Edith is shaking her head. 
Edith: Yeah. Edith is like, don't even come near me 
Robin: with that thing. And that's something that the typical person doesn't know. Correct. And since then, I have known people who've been on it for a very short amount of time and then come off of it. And I was like, Oh, okay, so it can work that way.
Um, but because I, and I may, I probably won't be able to ask those questions. So that's something I would definitely want to go into. 
Edith: Feeding tubes, vents. Yes, yes. Antibiotics. Yes. Yes. These are all surgery. All such great example. I mean, major. Yeah. General anesthesia, right. You know, again, all depending on what your situation is, right?
Meg: Yeah. Yes. So many great points. These are the exact types of things [00:23:00] that we can make choices and decisions about that maybe many people don't know like most. I think a lot of people think about just the CPR. Yeah. And that's it. Yeah. Yeah. But there's so many more things we can make choices about. 
Edith: When we talk about CPR, then we kind of segway into, oh, and by the way, do you have an internal IED?
Do you have a pacemaker? Do you have a terminal illness? Do you recognize that something different may happen? That may have to happen with those, I'm going to call them appliances, that's embedded in your body. 
Robin: Are we going to replace the battery when it starts to run out? 
Edith: Or are we going to call and have it shut off?
I mean, we've dealt with all of these questions with our folks and things like dialysis. Mm hmm. Are you going to make the choice to stop that? Yeah. Is your family going to support you? We need you, Meg. Yes. 
Robin: I am here. No, no, you be. I am here for it. Yeah. This is stuff that average Joe does not know, and so you can be there to [00:24:00] help with that death plan.
Yes. And, you know, everybody wants to just die in their sleep, but it's super, super, super, super rare that that actually happens. Yeah. That's right. Yeah. It is very rare. 
Edith: And I'm seeing Meg's role, too, as a compassionate source of information that, yes, I have compassion for this family, but I don't have that emotional intimacy where mom always liked you better.
Right. You know, where she can listen and then say, okay, let's pick out the things that are going to matter. Yes. Next week. Next month. That's right. In 10 years. 
Robin: So your position is kind of getting things ready for that day or, you know, when things start to come across, but you're not like the birth doula who is there hands on at the moment.
Am I correct in that? That is correct 
Meg: for the most part. Okay. [00:25:00] Sometimes I am with a client. During their active dying phase and at time of death, but generally, I'm not really it's I've supported up until that time, and I've kind of equipped the family and the loved ones with the resources and everything they need to feel supported and held.
During that time with their person. 
Robin: That's beautiful. 
Yes. And just a personal question that you don't have to answer, but how do you, you deal with death a lot during the day.
How do you switch gears at the end of a tough day? 
Meg: Yes, that's a great question. And I think I try to regularly do things to take care of myself. S leep is a really important thing for me, um, to feel like my best self. And I think all the clients I've ever been [00:26:00] with, When we arrive at the end of life, everything I always witness is just so much love.
It's really, that's all that matters. That's everything that matters in the end. Nothing else matters. It's all. Love and just being able to be there and witness that it's really it's really soul filling So 
Robin: Because it really is that's what matters in the end So yeah, well put well put so it's not always depressing right?
I remember being with my mother When she passed, and it was like a surge of, I got her through this journey. What, what an amazing thing for me to be able to do for her. So I totally get, and we lost our mom the same year, so I totally get why you do what you do. 
Edith: Yeah, absolutely beautiful. 
Robin: Well thank you for doing the work that you do.
And if somebody wants to call you up, or do you [00:27:00] have a website? Give us all the deets. I 
Meg: do. Yes. My website is my name. It'll probably be in the show notes too. Yes. Megan J. Marr. M E G H A N J M A H E R dot com, and on there I have a contact me form and my email address and my phone number, so. I am easily 
Robin: accessible.
So that will be in the show notes as well as, , links to addendums that we've talked about for advanced directives dealing with dementia.
I'll probably throw on a link for five wishes as well, just to get your basic, advanced directives done. And then once you realize that it doesn't cover everything that we talked about, you're going to call Meg. 
Edith: Maybe also a reference to the book. 
Hard Choices for Loving People, Hank Dunn. We use that book a lot in our workshops and we give it away by buckets. Fortunately for [00:28:00] us our community supporters, Advent Health Hospice, they provide that book to us now. So, yay! Because we were We were spending a tidy sum on that book. So it's a good 
Robin: book to have.
It is very 
Edith: good. It's simply written and nice to reference. 
Robin: All right. Well, I'm giving you an audio hug right now. So thank you for what you do. 
Meg: Thank you so much. So glad to be here with you both. 
Robin: Please make sure to subscribe to our podcast, Informed Aging, and tell your family and friends about us and tell them to listen to this episode.
If you'd like to support the work that we do at the Alzheimer's and Dementia Resource Center, please go to the website ADRC cares dot org slash donate. You can find us at facebook. com slash informed aging. Today's episode was recorded at ADRC's podcast studio. That's it for now. We're looking forward to our next visit. [00:29:00]