Peaceful End-of-Life Choices with Lowrey Brown and Brian Ruder from Final Exit Network

In this episode, I talk with Lowrey Brown and Brian Ruder from the Final Exit Network, a nonprofit organization that supports people who want more control over their end-of-life choices. Lowrey, the Exit Guide Program Director, grew up in a family where open conversations about death and the importance of quality of life were normal. She signed her first advance directive at 16 and has spent her life exploring how people can shape their own dying process, especially after seeing loved ones experience long, painful declines due to dementia.

Brian, president of the Board and a former exit guide, shares his personal story as someone who values independence and doesn’t want to suffer unnecessarily. Inspired by his mother’s end-of-life choices, Brian became involved in Final Exit to help others have more options outside the traditional medical system.

The conversation explores how Final Exit Network helps people who don’t qualify for medical aid in dying, including those with early-stage dementia or serious neurological conditions. Unlike medical systems that require a six-month terminal diagnosis, Final Exit provides education and guidance for those who want peaceful options on their own terms, legally, safely, and outside of state restrictions.

They also talk about the challenges of preparing families for this path, how social norms often don’t align with self-directed dying, and the emotional weight placed on caregivers. Final Exit exit guides support clients through every step—planning, preparation, timing, and after-death logistics—similar to what a death doula provides.

The episode ends with an honest look at legal issues, including how laws often treat all self-chosen deaths the same, regardless of context, and how Final Exit protects its work through the First Amendment by offering information, not physical help.

www.finalexitnetwork.org

Transcript

Lowrey: [00:00:00] We all need to start talking because death is gonna happen and like most things in life, if you don't prepare for it, chances of it going well are slimmer. 

Jill: Welcome back to Seeing Death Clearly. 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. In this episode, I talk with Lowrey Brown and Brian Rooter from The Final Exit Network, a nonprofit dedicated to supporting people who want more control over how and when they die.

We talk about how the Final Exit Network provides education and guidance to those who may not qualify for medical aid and dying, including people with early dementia and degenerative conditions. They [00:01:00] discuss the emotional and legal complexities of self-directed dying, the vital role of family preparation, and how final exits, exit guides offer compassionate support through every stage.

This is a deep, honest conversation about choice. I. Dignity and end of life autonomy. Thank you for joining us for this conversation. Welcome to the podcast, Larry and Brian. I have two guests today, which is always exciting for me to talk to two people at the same time. So thank you for coming on and if you just wanna start us off, just tell us a little bit about who you both are outside of the work that you do.

Lowrey: First of all, thanks so much for having us. It's a pleasure to join you. I am Lowry Brown. I am the Exit Guide program director for Final Exit Network. I was raised in a family that was very focused on quality of life over quantity. It was just a family value, I guess, if you wanna call it that, from a very young age.

And so. I grew up [00:02:00] in a environment where we talked about death and talked about what we did and did not want at the end of life, and my parents had me sign my first advance directive at 16. That's how I got interested in looking at death as more of something that we can shape rather than this thing that just sort of happens.

And then of course, throughout life you have relatives, you have friends, you see people whose endings. Were not something you would want for yourself in particular, I had a couple of relatives who sank into dementia and institutionalization, and those things too were very formative for me in thinking about how can we do this better and really honor a human life and not have it drag on into places that I think many of us would just be horrified to have our lives end in.

So that's kind of how I came to this. 

Brian: I, Brian Ruter, I'm the president of the Board of Final Legs Network, and I was an exit guide for seven years under Lowery's direction. I come at this from a number of directions, [00:03:00] but mostly I'm a control freak who doesn't like to let other people determine things. So I tell everyone I'm 83, I walk five miles a day.

I don't take any prescriptive medicine. I wanna live as long as I can, but I don't want to suffer. I don't want doctors to tell me when I should die, and I don't wanna waste a lot of money trying to stay alive for six or eight months longer. I was born a very devout Catholic, but my mother at 92 decided that.

She wanted to end her life because she couldn't help people anymore. So she bought her own coffin. She planned her own obituary, and ever since then I've realized that we do have some controls. Final Exit is one of those organizations that really works very hard at providing people with choices and dying, and it just resonated with me.

Jill: Beautiful. Why don't you 

Lowrey: tell us what is Final Exit? So, final Exit Network, we're a grassroots nonprofit organization and as Brian said, we are dedicated to choice in dying. We [00:04:00] exist to educate and support individuals who want to shape their own endings and not have that be left to chance or the medical profession or the legal profession or their relatives.

Were there politicians, pastors, or anybody else? 

Brian: I think that's really the important thing that we've done this for 20 years. Our founder was Derek Humphrey, who is the father of Right To Die in this country, who formed the Hemlock Society in 1980. We've been around a long time. We've had a lot of experience and everything we do is legal, safe and peaceful.

Jill: So is it medical aid and dying specifically that you do, or is it the pre-planning? Like what's the different services that you do with people? 

Lowrey: So it's neither we operate outside of the medical system. We are not restricted the way medical aid and dying practitioners are, and we're not restricted to states where a medical aid and dying bill has been passed.

Right now, medical aid and dying is only available in assert [00:05:00] states, although Oregon and Vermont have dropped their residency requirements. But coming back to Final Exit Network being really a grassroots organization. We are a boots on the ground educating people who meet our criteria on comfortable and peaceful ways.

They can end their own life outside of the medical system so they don't have to answer to doctors about. When they want to make that choice. So we are currently teaching people about the use of inert gas as a comfortable, safe, and reliable method of self deliverance, and it's no surprise to you, I'm sure, like even a medical aid and dying death is a little bit outside of the social norms.

I. And so for families and for the patient who might be using medical aid and dying, there's a lot of preparation of thinking like, what does this look like? What is this pathway gonna look like? What rituals, how are we gonna celebrate this? Because it's a different pathway for Final Exit network for people who are working with the exit guide program.

It's very much that same kind of [00:06:00] conundrum, our exit guides. Work with our clients, really soup to nuts in many ways like a doula would because it's not as simple as just going and picking up a prescription. We work with the family. We work with the client. What do they want? What are they timing? Does the family understand?

Do they respect? Do they had a chance for goodbyes? Who's gonna notify the authorities of the death, you know, because none of these pieces are in place based on other social norms. So we work with people throughout the whole process. 

Brian: And Jill, if I could just add, since we don't require that a person be terminal, as the medical aid and dying laws require a person to be terminal within six months.

We're able to support people with dementia. I believe 10 to 15% of the people that die using our services are in some stage of dementia, but they have to still be cogent in order to use our method. We are able to address people who have neurological diseases and and people who don't wanna wait until they're six months away when they have medical [00:07:00] issues.

Jill: Yeah. 'cause I know dementia is one of those. Times where personally that would be the time when I'd be like, all right, y'all, like once I get to this certain stage, I don't want my family having to take care of me. And that's the one case when they're like, well, now you absolutely can't use medical aid and dying.

You know? So it is nice to know that there is. Other options. I mean, I know some people can choose voluntarily stopping eating and drinking as a way to have control over the end of their life, but you have to be at the point where your dementia is not as far as it is where you're still able to make that decision.

And is that kind of the same case for you that they still need to be able to verbally communicate it clearly that that is their wishes, or can it be. You know, maybe I write an advance directive ahead of time that once I get to this point, then like how does that all work out for Final Exit Network?

Lowrey: That is a [00:08:00] very good question, and it does get exactly to the heart of what makes dementia so difficult. Brian and I have spent a lot of time talking about dementia and choice in dying. What you laid out is the conundrum. There are actually two times in dementia when you can consider hastening your death.

If you wish to nip it in the bud, you do have to go early. People in early stage dementia typically retain decisional capacity so they can make that kind of a decision and maybe make those kinds of difficult plans and execute them. But also people's quality of life in early stage dementia often is better.

And so the control freaks among us are like, I don't care. I'm gonna go early because I don't want what's coming. 

Jill: Yeah. 

Lowrey: There is also another option of. Adding a supplement to your advanced directive, specifically instructing your healthcare representative that when you reach advanced stage dementia and you're no longer expressing an interest in food and fluid, to [00:09:00] have your healthcare representative initiate voluntarily stopping heating and drinking on your behalf.

We have on our website, um, we have a page on sort of options for Hasting death with dementia, and that has a link to a couple of. Supplements that you can add to your advanced directive, calling for voluntarily stopping eating and drinking in late stage dementia. Unlike regular advanced directives, which are described in statute and have legal standing, these supplements are not described in statute.

They have been used in the past and questioned legally. Attempts have been made to write them in better ways so that they're a little bit more solid. We don't yet know how one of these supplements will hold up in court if it's challenged, but we're sort of, we're certainly interested and if a case came up, we would be interested in supporting it to say people should be able to request voluntarily stopping eating and drinking.

On behalf of their incompetent selves. But as you note, there's that time period between, there's a researcher, Gina Davis, I think she calls it the missing middle. You can end your life early while you still have [00:10:00] capacity, either by using the exit guide program, going to Switzerland, doing voluntary stopping eating and drinking.

But once you get into moderate stage dementia. You're still kind of walking and talking and you're still hungry, but you don't have the cognitive capacity to make a life-ending decision or to carry out a complicated plan, so you're kind of stuck. I think the advanced directives for dementia calling for voluntarily stopping eating and drinking in late stage dementia, they're great.

They'll chop off that sort of tail end of dementia. We don't really have a solution for that middle. 

Brian: It's, uh, when we first started this, I thought that you would be able to have in your advanced directive that after I lose my ability to think properly, ha have somebody work with me to stop eating and drinking.

It doesn't work that way as Larry points out. You have to wait until the person. Doesn't feel like they want food and that can be years. I was very disappointed when we first did our advanced directive because I thought it would address that. It's my understanding, Lara, you can [00:11:00] address this, but if you have something like you have, you need insulin or something that you can in your advanced directive suggest that you don't want to take insulin anymore and you might die that way.

Lowrey: Very good point. 

Brian: Yeah, and 

Lowrey: that actually goes in your standard advance directive. You can instruct your healthcare representative once I pass a certain point. Please discontinue any medical treatments that might be therapeutic and provide only palliative treatments. Brian is raising a really good point in that there's this theory versus practice.

In one sense, you can write whatever you want in your advanced directive, but at a practical level, if you are instructing your healthcare representative to stop feeding somebody. Who is asking for food, even if you know that that person's competent self wouldn't have wanted it. That's a really big ask for family members, for caregivers.

So the idea that the advanced directive for dementia for vaid in late stage dementia, the reason it really has to [00:12:00] be in late, late stage dementia is 'cause it's not really fair to ask your caregivers to. To withhold food and fluid from someone who's asking for it. It's more of a practical, like how do human beings actually operate with one another?

You know, even, you know, when Brian mentions medical choices, even there, you're gonna need to prepare your healthcare representatives ahead of time because I think it's a psychologically difficult shift. Love means feeding. Love means medical care. That's what love means for all of our lives, and all of a sudden there's this time where love means something else.

You wanna prepare your healthcare representative for that so they can make that transition a little faster and more gracefully. It's a hard shift. 

Jill: Yeah, that is a really hard shift legally. I know when I sat with somebody that did medical aid and dying, my husband, he's not involved in this world at all.

His big concern was like, can they come after you? Can his family come after you and sue you? Can the [00:13:00] police show up? What are the legal things that you need to worry about? As much as we like to say, we give people, you know, the right to choose things in life, there's also, we value life. To the extreme in some cases in our culture.

Was that something that you ever have to deal with? Is there certain things you set up in place ahead of time? How do you work with this idea that even if your client is like, no, this is what I want. What about all the other people that might come in and be like, yeah, but that was my mom, or that was my brother, or That was my so and so and now you just ended their life.

So what do you do about that? 

Lowrey: Well, Brian is the one who makes sure that we have the funding to defend ourselves. Brian, why don't you start us on that one? 

Brian: I suspect this is the most difficult process about what we do because as you point out. We have some issues in the law. The police are required when somebody [00:14:00] ends their life before they naturally die.

The police are obligated by law to make sure that nobody assisted them or kill them. There's a conflict. They come in when somebody hastens their death. Their first goal is to make sure that nobody assisted and that nobody encouraged or forced these people to die. So it creates an environment that is really difficult.

I'll pass it back to Lowery, who is much more knowledgeable about this. 

Lowrey: And this circles a little bit back to the earlier topic of we don't have social norms. There's just one word, legally speaking, and it's suicide. And I'm not one of these people who wants to parse what's suicide or what's not suicide.

Suicide is just a choice to end one's life, but there is no nuance in terms of a police response to a 20-year-old who's just had a breakup versus an 82-year-old with terminal cancer. There's just this one thing when it comes to medical aid and dying. I think you as a doula have a certain legal protection that medical aid and dying is described in state [00:15:00] statute, so you have that legal protection choosing to end one's own life.

Suicide in legal parlance is legal in all 50 states in the District of Columbia. That said, if somebody indicates that they plan to end their own lives. Everybody assumes they must be crazy, and if somebody calls the cops, the cops have to come talk to them, make sure they're not an immediate danger to themselves.

Even if what they're planning is very well considered and well reasoned and has family support, the laws that we struggle with the most are, as Brian was referencing, laws on assistance. Many states have laws that prohibit assistance in a suicide typically interpreted as a physical assistance or providing the means.

So we're very careful. In the guide program. We do not provide physical assistance and we do not provide the means, meaning the equipment, those things. Our clients have to do themselves. We operate primarily under the protection of the First Amendment. Because speech is protected in this country. [00:16:00] I can talk to you, tell you what you need, tell you how to put it together, tell you how to use it, and I can sit with you if you decide to end your life.

I can sit with you when you do. In fact, that's what we do in the guide program, but we cannot provide physical assistance. There's two problems with this. One is sort of selfishly practical in that. As you're pointing out, it's really easy to make false accusations. Yeah. So if somebody's unhappy, they could always say, oh, they must have helped, whatever.

So there is always this kind of legal threat of a false AC accusation at a more heartbreaking level, and this is something I have to deal with pretty regularly. We have to be biased because of the laws. We have to be biased against those whose physical disabilities would prevent them from assembling and operating the equipment themselves.

That's wrong. It's just wrong, but. We have to adhere to the law. I'll get a call from somebody who says, my mother is in late stage Parkinson's. She can sort of lift her right hand. She's desperate to go. She's begging me, and I have to say [00:17:00] I'm, I'm sorry. Her physical ability is such that this option is not available to her.

It's available to somebody. It's able bodied, but it's not available to her. 

Brian: Hmm. 

Lowrey: And that is so heartbreaking. 

Brian: Jill, one of the things we've done in the last year or two is to develop some relationship with the pla, the people in Switzerland, because this woman that Lowry is talking about, if someone can get her on a plane and get her to Switzerland, she can die there very peacefully.

So we try to make sure that people, especially older people that may not be able to participate because of the equipment we use, are aware that there is another solution for them if they so de so decide. 

Jill: Because I have heard of people going to Switzerland, and I guess you just said Oregon and Vermont.

Now they don't have the requirement that you be. A state resident. So I guess that can maybe change things up a little bit if somebody could get there. But you still, I think would need to probably be there and go to the doctors and get the prescription. And so [00:18:00] even if you don't have to be a resident, it's not like you just go for a quick trip.

Of course, quick trip, you're not coming back, which you know like, okay, I am gonna fly this weekend. It would probably be like you would have to go out a couple months in advance and really do the whole thing. So that's. Better, I guess, but still not an easy option for people. 

Lowrey: It's not easy, and if you do qualify for medical aid and dying in this country, each state has its own law.

They're slightly different. The general framework of the United States is you have to have eternal illness, and two healthcare practitioners say you're within six months of death. You have to be competent at the time, which is why dementia patients are written out. But I don't think you need months, but you do need to plan on the whole process taking place in the state.

So in Oregon or in Vermont, and you're absolutely right, it's not a time of life when you're excited about a road trip. Gotta find an Airbnb, even if it's just for a couple of weeks, make contact with doctors. All of [00:19:00] that stuff is just logistically challenging when you'd rather be at home saying goodbye to your loved ones.

Jill: Yeah. And you said you use a form of gas. Can you tell me a little bit more? 'cause I think I know what you're talking about just from talking to other people, but I just wanna make sure that I'm understanding and anybody that's listening understands as much as you're comfortable explaining about it. So the word that 

Lowrey: I used was inert, which means a gas that doesn't interact with anything.

Currently, we're using nitrogen, and it's a method of self deliverance. I'm happy to talk about some of the science behind it. It's based on a quirk of evolution. If you think about the breath cycle, if you're breathing in, you're breathing out, right? They're completely linked. You can't do one without doing the other.

So the body really only needs to track one spot on the breath cycle to make sure. You're breathing. And if you think back in evolutionary history, that was all that was needed. And it turns out when natural selection rolled the dice, the spot on our breath [00:20:00] cycle that our bodies track is the outbreath. So our bodies make sure that we're exhaling carbon dioxide, but it's weird.

There's actually no biological alarm bell for you aren't getting any oxygen. And so that's what makes that method of self deliverance comfortable and reliable if you're breathing in a nitrogen environment. And exhaling all your CO2. The body doesn't realize. Anything's gone wrong. That is very interesting.

I did not 

Jill: know that. 

Brian: The inner gas method is very effective and very efficient and very fast. A person goes unconscious in 45 to 60 seconds and dies within 10 to 15 minutes. It's a hundred percent. It's the only legal method that we can find. We would love to find something more elegant, but everything else is illegal.

So all of this is legal and it's very effective and fast. 

Jill: That's faster than medical aid and dying. And I know it doesn't happen often, but sometimes it doesn't work if somebody does [00:21:00] medical aid and dying. So yeah, that's actually really interesting that there is a more effective method, but because doctors aren't prescribing medications, it's not as widely talked about.

Brian: Another thing that I think might be interesting. The people that use our services are very similar to the people that use the medical aid and dying laws, except. The people that use our service are even more educated. As you probably know, the people who use medical aid and Don, and they're highly educated, most of 'em have at least a college degree or advanced degree.

They're financially secure. It's, it's interesting. Of course most of 'em are white also, but, but these are all very rational people. I continue to say that there is such a thing as rational suicide. I've met so many people that are so wonderful, so intelligent, so compassionate, so caring. Many of them are concerned about their family and they don't want to be a burden.

They're very intelligent people, most of whom have [00:22:00] planned their life and they wanna plan their death. One thing that I've learned being a guide in the program is that the people that really use these services are compassionate, intelligent people. 

Jill: Yeah, that's an interesting point. I, I feel so many people, it really is about their families.

They've watched somebody else that they love. Go through a process and the toll that it takes on the caregivers. And so they don't want that for their loved ones and their family members. I wouldn't want that for my children or my husband, especially if it was sometime soon, which, you know, I'm a little superstitious.

I'm gonna knock on some wood. Hopefully it won't be. But if something were to happen, my kids are young, 11 and 14, I don't want them to have to watch. This long process, the inevitability is not changing. If I have an illness that I'm going to die at the end of, I would rather have it be sooner rather than having them have to watch.

[00:23:00] Something that's gonna traumatize them in the long run. So I can understand why people would choose that, and that's why I find it frustrating when people are so against it. I've talked to doctors that are against it. I've talked to a lot of people that are really against somebody choosing it, but to me.

You're right. It's not like these people are just coming to this rash decision of like, yeah, you know what? I think today's a good day to do this. It's like, no, they've thought it through. They've educated themselves and they understand what is coming for them anyway. They just wanna have some control over when that happens.

Lowrey: Choice in dying is such an uphill battle in this culture. Nobody who gets to that place through one of these paths is coming to it quickly. Whether it's medical aid and dying, and especially not working with the exit guide program, it takes time, it takes planning. Brian said at the very beginning about being something of a control freak.

[00:24:00] He and all of our clients, these are people who have directed their lives and you know, so it's no surprise people do tend to die as they lived. These are people who want to shape their own story. And actually, Jill, you raise a really good point. There's a lot of nuance here about what those of us who want choice in dying want it for.

And I think they all go together. I think people always try to put things in separate buckets. You don't wanna burden your family. You don't wanna be remembered as a burden, even if your family would be happy to care for you. Your own sense of what you want for your story, how you want your last chapter to close doesn't include that tail end of whatever horrible illness it is.

When you think of any resources you might have saved, you want that to go to your kids towards things that you value. As opposed to going toward keeping you alive in a condition that you don't wanna be in, when you can't participate, when you can't be [00:25:00] engaged in the things that you found meaningful. All of those things go together, both for the person who might wish to end his or her life, but also for the family members.

They have a lot of things that they have to fit together too. You can love someone deeply, not want to lose them, want them to try every treatment in the book and just hope. You can also say, I don't want this loved one to suffer. I want my loved one to feel as though they have all their autonomy. I'm gonna support this person in what she wants for her life and her death.

You can want all of those things at the same time. 

Brian: We've done research with the people that use our services, and it's always interesting because it is the autonomy that people are most concerned about When we ask them why they have decided to ask for our services. The first reason is they've run out of medical alternatives.

The second is they're afraid of ending up in a nursing home. You would be surprised how many people worry about losing capacity and ending up in a Medicaid nursing home as [00:26:00] opposed to one that would cost 10 to $15,000 a month. So it's a very complicated decision as you get to that point in your life where you're considering dying.

And the reasons that people do it are in many ways, they're very intelligent. They understand that they don't have a lot of alternatives, and they wanna be in control. 

Jill: I don't think most people realize how expensive a lot of these nursing homes are. I was very surprised when I got into this work and I started visiting some of them that, I mean, yeah, the really nice ones are 15,000.

20,000 a month, right? For somebody to be there. The, and that is not a typo. The reasonable ones 10,000 a month, maybe 8,000. I can't afford that. And so, you know, I think about my mom. I'm like, oh, I guess she's moving back in here with me. Do you work in all 50 states? Like how does that work if somebody say, is listening to this?

'cause I actually do have [00:27:00] listeners that are all over the country, even actually all over the world. And so somebody's listening and they're like, yeah, you know, I'm in a super conservative state where medical aid and dying is probably never gonna happen. I need an alternative. How do they find something that would work for them?

They call us. 

Lowrey: Choosing to end your life is not illegal in any state. So somebody who's in a conservative state that doesn't have medical aid and dying, and even as Brian pointed out earlier, even people in medical aid and dying states, those criteria are pretty narrow. You can have like a neurodegenerative disease that's gonna get really ugly long before you're within six months of death.

We also serve people. I'm not exactly answering your question, but I think this is an interesting tangent, I hope. Yeah. 

Brian: You know 

Lowrey: when Brian was mentioning that 10 to 15% of our applicants are applying with a dementia diagnosis, so that's one chunk of people who are not served even in medical aid and dying states.

We have another [00:28:00] chunk of our applicants, another sort of 10 to 15%. Who've come in under our criteria that we call a constellation. By that we mean a constellation of conditions where any one of these medical conditions might not be that big a deal, but you pull them all together and it seriously impairs quality of life and the walls are closing in.

You can imagine if your eyesight's getting really bad and you can't really read all that well anymore, and your hearing is starting to go and hearing aids aren't working that well, you can't socialize and your arthritis is bad enough. You can't do the things. You used to do. You can't engage in ways that are meaningful.

But the fact that we have so many applicants who are applying under that umbrella also tells you, here's another group of people. They are terminal, most of them, right? In the sense that advanced old age may not be an illness, but it's absolutely terminal. But you can't get a doctor to say, oh yes, you're within six months of death because of advanced old age.[00:29:00] 

So they have to turn to us. We do serve individuals in those situations. Our website is a great place to start. We've got some handouts under the resources menu, and there's one specifically on options for hastening death that lays out medical choices voluntarily stopping eating and drinking medical aid and dying in this country.

Medical aid and dying in Switzerland. Do it yourself. Methods of books that are available. And the Exit Guide program, you can contact us. So there's a Contact us page at the website and it's final exit network.org. And just submit a form under the Exit Guide program and end of life questions. And that's what our coordinators do most of the time.

They are just answering questions. You don't have to be interested in the guide program. You don't have to be planning to apply. We're here to answer your questions about choice and dying broadly. What are the options? What are the windows of opportunity? What are the costs? What do I need to think about?

All of those kinds of questions. 

Brian: Hmm. Jill, I have to get off a few minutes, but I, I, I wanna just tell you one story that sort of fits in with what Lowery was [00:30:00] saying. I had this wonderful woman in her late eighties who was, I was there on the day she was gonna die. Her daughter and her son were there, and, and the other guy and myself.

She wanted to have a little party. She made some little cakes and wine, and as we were talking, she said, other than the fact, I can't see, I can't hear, and I'm losing my mind. I'm in perfect health. She qualified for us because she had early stage dementia, macular degeneration, and used very severe hearing aids.

But she was this lovely woman and I think it's indicative of people, you know, that she was there. We all knew she could probably live. Further, but she had reached the point where she said, this is it. And she laughed and we had a good time and she died very peacefully with her family. So it was just wonderful.

So I'm sorry that I have to get off Jill, but I really appreciate this. Thank you. And good luck to you and Lowery. Now you can go ahead and say whatever you really want. 

Jill: Well, thanks for joining us, Brian. Thank you so much, Brian. So is there a guide with [00:31:00] every person that does this? Is there a guide in every state?

So depending on where people are, might it be that there's nobody that can physically be there with somebody, but you could still help people? What's that look like? 

Lowrey: So the big picture level, the exit guide program serves the general public with information. We have an 8, 6, 6 number that you can find on the website and a form that you can fill out.

A volunteer will get back to you within 24 48 hours just to answer questions. Mm-hmm. It is ama, well, not amazing to you, but I think it is amazing how little people know about death and dying in general, and specifically about choice and dying. The vast majority of people that Final Exit Network serves, are served by coordinators, the volunteer role that answers all of the incoming questions and the inquiries.

A very small percentage of those really small would actually be interested in and qualify for exit guide support. If they are, the coordinator would work with them on submitting an application. We do require [00:32:00] that people write a personal statement describing their conditions, how it impacts their quality of life, what their values are with regard to end of life choice, and what do they want from us.

So we have that in their own words, and we ask that they submit medical records substantiating what they're telling us in their application. As Brian said, we do not require that people have a terminal illness or that they be within six months of death, but we do require that people have one or more medical conditions that can reasonably be understood to seriously impair quality of life.

Then we would have another one of our volunteers interview the applicant. I don't like the term interview 'cause it makes it sound like a job interview. It's really more information gathering, you know? Where do you live for your family members? Do you have any pets? Have you considered what you want done with your body?

That application is then sent to our medical review committee, which is an interdisciplinary team of healthcare practitioners who just review it to make sure that it meets our medical criteria. If so, then a person is accepted for guide [00:33:00] support. And I do wanna clarify there's some differences in our process in medical aid and die.

Typically with medical aid and dying. Once you have the doctors sign off, you're kind of there. In our process, the guides also do a lot of evaluation, so it's important that the guides are evaluating, you know, cognitive capacity, physical ability to do what's needed, adequate support from friends and family, things like that.

If you're accepted for guide support, you would be paired initially with a single guide who would do a lot of talking over the phone, finding out about you, talking to your family members. Then that person would. Start to educate you on what's the equipment you need? How do you get it? Once you get it, you would schedule an education visit with your guide, and at that point a second guide would be assigned and the two guides would come to your home.

You know, we work throughout the country, whether or not we have a guide in your state. This is what our donors want us to do. This is what they want. The Exit Guide program to function, and this is what we do. We come to you. You have the education visit. We get to [00:34:00] meet you, meet your family, friends. Teach you how to use the equipment, do a rehearsal.

At that point, you can put the equipment in your closet and get on with your life. At that point, a client has everything they need. They can proceed on their own if they wish to. Most clients, if they do, then decide to exit, which many don't for many people. As with medical aid and dying, right? Yeah. For many people, knowing they have control gives them the freedom they need and they can just get on with their lives.

That's a resounding success in my book. For those who do decide to end their own lives using the equipment, most of them will call the guide back and schedule a time, and the two guides will return and be with the person just to be a compassionate presence when they die, 

Jill: which I think is so beautiful. I love, and again, I guess maybe because going into hospitals, I volunteered at different hospitals I've seen.

What it's like for some people at the end of life, [00:35:00] basically alone, laying in a bed by themselves hooked up to machines they didn't want to begin with. You know, sometimes in pain, sometimes just completely not understanding what's going on around them. That is not what I want the end of my life to be. I would rather have my family around me be able to have tea and some cake and just celebrate my life together.

And then to be able to say, okay, I don't want this to be the end of my life. Reality is the end of my life is coming, and so I want it to be now while we could be together and enjoy each other's company, like that seems so beautiful to me versus the reality. Of what so many people go through at the end of their life, but that's normal to people versus the idea of somebody choosing when to end their own life.

I don't know. I'm hoping that it's gonna become more normalized in our society. 

Lowrey: That's definitely part of what we want to do. Normalized choice [00:36:00] in dying. There's a default path, and it's the default path, not because a lot of people have thought about it, it's the default path because people haven't.

Thought about it, and therefore there's liability. There's this honoring life. All of those things that have this super tanker full speed ahead towards preserving life regardless of quality. Even doctors who are sympathetic with choice in dying are very careful about what they will say to patients or patients loved ones about somebody's prospects.

They don't wanna get sued, and I'm sympathetic to that. I also really quick wanna jump in just for your listeners. The exit guide services that we provide, we provide those free of charge. As I said, that's what our donors want us to do because of the laws ing physical assistance, we can't provide the equipment so people would financially have to be able to purchase the equipment themselves.

And I wanna say three to $500 range is what people would be looking at 

Jill: considering that medical aid and [00:37:00] dying. You know, you're looking at a thousand to $3,000 easily to go down that path. So, you know, financially this actually is a little bit better. Not that to me at that point. I mean, unless I literally didn't have it, that would be the least of my concerns because again, staying alive for a long time in a hospital, even with health insurance, even if you're on Medicaid or Medicare, it's still gonna cost you more money.

And it's not just the financial cost, it's the emotional and even the spiritual cost to going through that or witnessing a loved one go through that, that's really difficult. 

Lowrey: I know people tend to be squeamish about talking about money at end of life, but I think what you just said sort of brings in the perspective on the money, right?

If somebody is really enjoying their end days, I. In whatever condition. It might not be a condition that I would want to be in, but if that's what's meaningful to them, if they wanna see every last [00:38:00] sunrise, then it's money well spent. But I think where people get really upset is the idea of thousands, tens of thousands, hundreds of thousands of dollars going towards keeping me and others alive in conditions that we don't want.

It's based on my spiritual values, based on what it is that I think gives life meaning for me. The money adds extra goal to what is already a deep tragedy. 

Jill: Yeah. You pointed out doctors being uncomfortable having the conversations, and it's one of those things where I don't think doctors are well trained in how to have the conversation, but also what I've witnessed on the other end of the spectrum is doctors trying to have the conversation.

I've literally witnessed a family member screaming at a doctor. You don't value life, but we do while their person is literally bedsores, rotting away in a bed. You call that life, I don't know. You know, like [00:39:00] I am not so sure and the person in the bed when you were to speak to family members when they were so able to speak.

They had already been saying for months, I don't wanna do this anymore. I don't wanna do this anymore. This isn't living, I don't wanna do this anymore. But the family members were just so like, I can't let go. And so they'd switched doctors just to find a doctor that would be like, fine, sure, whatever you want.

Like we'll do all this stuff. It's heartbreaking though, like as a outsider witnessing it and just watching, and I. I'm not even trying to judge the family members, you know, like I'm compassionate towards them too. This isn't a place that I wanna be in either feeling like this huge burden on my soul really.

On the fact that they're seeing it as they're ending their loved one's life, which is why we need to have more conversations, why we need to get better at talking to our loved ones and get more comfortable with it way before we're ever in [00:40:00] this position. But we just don't. Not yet. Hopefully 

Lowrey: soon. Well, and that's exactly what you're working on, and your point is very well taken.

It's very easy to blame the medical system. You're absolutely right. It's everybody. You know, if family members start asking the doctor, the doctor's probably gonna open up and be like, chances are slim, or whatever it is. We all need to start talking because death is gonna happen and like most things in life, if you don't prepare for it, chances 

Jill: of it going well or slim and.

It's not as hard as we imagine it will be. My mom and I just went for coffee right before this call, during our time having coffee. We just had like a brief conversation. Obviously it's probably a little easier because this is the work I do. But also she was like, you know, I don't think I want a funeral.

Like if you wanna have a party afterwards and like have some people and like celebrate my life, that's fine, but I really don't want a funeral. That whole thing, just spend all this money. Like I don't want it. And that was it, right? That was a brief conversation. She [00:41:00] has it in writing, but the conversation was just like, Hey, I don't want this thing.

Just do this other thing. All right, cool. Let's go back to drinking our coffee. It doesn't have to be this, like, let's sit down and have this real heavy, morbid, deep conversation. You can do it in small chunks over a period of time while also being like, it's also all in writing. Here's where it is in the house, so when you need it.

I wanna talk about why I don't want these things or why I do want these things, but so many people get uncomfortable and they'll, oh, we don't need to talk about that now. You're not dying yet? Well, no, she's not dying yet. But I don't wanna wait until she is to try to have that conversation with her. So it doesn't have to be that hard.

You can make it a little easier and kind of lighthearted and just make it a conversation. Like anything else you would talk about. I think that is an excellent point. 

Lowrey: Everyone says we don't need to talk about it now 'cause you're not actively dying. When you're actively dying. Or there's a crisis is not a time when everybody is cool, calm and collected and having an intellectual discussion.

[00:42:00] By definition, that's the wrong time to be having it. Your point too about over time, like these are, these are hard things to wrestle with. I mean, death is always gonna be challenging for us as humans. Repetitive. Thinking about it gives us time to slowly masticate and digest. You are right. Do it over a lovely family dinner.

One of the handouts we have on our website is F'S 15 favorite discussion, starting favorites, and it's a couple of movies or books or things that you can share with a loved one. Say, let's watch this and then all hang out and eat cake together. And just let me tell you a little bit about what my values 

Jill: are.

You already mentioned you have some resources on your website. Um, I'll put a link in the show notes to the website. Anything else you wanna tell us about the website or your services or any last things before we wrap up? 

Lowrey: I'll come back to the website because there are good resources on there. Under the services tab, there's information.

I'm going to Switzerland just so people can get an introduction to that. The webpage on dementia will take you to the forms [00:43:00] for voluntarily stopping eating and drinking of late stage dementia. A bunch of handouts under the resources menu, and I do encourage people to reach out to us through the contact page.

People are sometimes feel uncomfortable reaching out to our volunteers 'cause they're not ready for the exit guide program or like they're there to answer questions. That's all they're there for. So random question about end of life paperwork, choice and dying. Just give them a call. Don't be shy. 

Jill: I love it.

It's beautiful, and thank you again for you and Brian coming on today. This is really interesting. I definitely learned some new stuff, which is why I love my podcast. That's why I started the podcast. It gives me a chance to talk to really cool people and learn lots of things that I didn't already know.

So thank you for coming on. I appreciate you. Oh, 

Lowrey: it's been such a pleasure. Thank you for having us. 

Jill: In my next episode, I sit down with my friend Jen Riggs, to explore her journey. From stay at home mom to passionate dementia care advocate after a back injury ended her commercial [00:44:00] baking career. Jen found unexpected purpose at the front desk of an assisted living facility.

There she discovered a deep connection with residents, especially those living with dementia. Jen shares how becoming a certified dementia practitioner and following the teachings of Tepa Snow transformed her approach to caregiving. She also opens up about the emotional reconnection with her estranged father.

As he began to experience cognitive decline. That personal experience solidified her mission to help families feel. Supported and understood during the challenges of dementia care. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated.

Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show. Your contribution will help keep the podcast [00:45:00] advertisement free.

Whether your donation is large or small, every amount is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription, as well as a link to my Venmo if you prefer to make a one-time contribution.

Thank you and I look forward to seeing you in next week's episode of Seeing Death. Clearly.