Podcast #145 VSED Part 1: One Family’s Experience of a Terminal Fast – Kate Christie, Author of The VSED Handbook

Kate Christie and her family went through the experience of VSED when her mother chose to “voluntarily stop eating and drinking.” This choice to hasten death is not to be undertaken lightly, but it is a true choice that is legal and available to anyone. How does it work? Why would someone choose this? What was the experience like for Kate, her father, and her mother? Learn about her experience as the daughter and what is critical to have in place for VSED to painlessly succeed. Next week’s episode: a conversation with the doula who guided their experience.

Transcript:

Diane Hullet: Hi, I’m Diane Hullett and welcome to the Best Life, Best Death Podcast. Today I’m talking with someone who’s written, I think, a really, really important book. It’s called the V CED Handbook. And I’m sitting here with Kate Christie, author of this little slim volume. And we’re going to talk about what is V CED, how did her mother come to the decision to utilize V CED, and what did Kate, you know, as a daughter really learn about this?

So welcome, Kate. Thank you very much. I’m happy to be here. Yeah, I’m excited. This is going to be two back to back podcasts. So Kate and I are going to talk this week, and then Nancy Simmer, who was Simmers, who was the registered nurse and death doula for their family, will talk about this week. V SED in general in this situation as well.

So this is, I think, really, really going to be good information for people. So we should probably start off by just saying, you know, what is V SED? V S E D. And I throw that around like people know it. Not everybody knows what it stands for. 

Kate Christie: Yeah. It’s, so it’s an acronym for voluntarily stopping eating and drinking.

So V S E D. Um, it’s basically for people who are nearing the end of their life or have a terminal illness. And, uh, choose to exit life under their own power. It’s, most people refer to it as hastening death. Um, so someone’s already dying typically, and they decide that they don’t want to live to the end stages of whatever disease they have.

Diane Hullet: Yeah, and I think that’s important to kind of differentiate between medical aid and dying, often called MAID, which is legal now in a bunch of states. I think 11. Yeah, I think that is the correct number with a lot of legislation introduced in other states. So someone who’s terminally ill with six months to live, going through a lot of regulations that, Uh, decide determine whether they are eligible for made.

That’s one option for hastening death, right? But that’s not available to everyone. And no said is this really interesting, uh, option of a choice at the end of life. So, 

Kate Christie: you know, particularly for folks who have dementia, ALS. Parkinson’s some of these, um, very long drawn out diseases where it’s not clear that you have six months to live, or you’re losing decisional capacity by the time you get with, say, Alzheimer’s when you’re within six months of death, you do not have the mental capacity to make medical decisions for yourself legally.

And so made is for people who have decision making capacity here. What’s interesting is Canada recently added, uh, dementia. As something that you can do made for and so my understanding is a little bit slim on this but I think it’s that you have to have an advanced directive and you have to agree ahead of time and you have to have a person who’s going to advocate for you and who agrees to say, all right, it’s time for you this is what you wanted, I’m going to help you with made, but the US has not done that.

At all. 

Diane Hullet: Right. Right. Like, almost like dad said when he was of sound minded body, that if he couldn’t do this, this, and this, and didn’t recognize this, this, and this, that would be the time. And so I think the advocate. Yeah. 

Kate Christie: Right. And I think the patient has to set it up ahead of time legally with the maid authorities to be like in Canada to be like, okay, This is my person I’m choosing made when I hit this point of my disease and this is the person who’s going to help me.

So again, my understanding is a little on that, but 

Diane Hullet: yeah, yeah, we’re, we’re kind of speculating and it’s not the case in the US, but it’s super interesting. Well, so Kate, tell us, you know, tell us about your mom and how your family kind of arrived at this. 

Kate Christie: Yeah, so my mom, uh, was a fiercely independent person, um, and she watched her mother, uh, die from Alzheimer’s.

It took seven years in a memory care facility. Um, and as my mom said, it broke everyone’s hearts to see her die in a memory care facility, and my mom had no intention of going out that way. So from the time that her mom was ill, she would say to me, if you put me in a memory care facility, well she would say nursing home, but what she meant was a memory care facility, I will haunt you.

You know, don’t, don’t, don’t. ever do that to me. Don’t ever let your father do that to me. Don’t let anyone put me in a home. And I was like, okay, okay, I’m sure. I mean, here I am, you know, 25, 30, saying, sure, I can do that. And of course it’s much more complex. But, um, when she was diagnosed with, uh, cognitive, uh, impairment, uh, she was diagnosed with mild cognitive impairment.

Initially, and her neurologist told her that, uh, only 50 percent of people with MCI, uh, progressed to Alzheimer’s. And she was kind of like, yeah, we have it in our family. It’s absolutely going to happen to me. So she started to think about what can I do to ensure not going into a care home. And the only thing she could really think of was some sort of suicide.

Um, and so she was kind of like, Huh, I don’t know what I’m going to do. And it was really upsetting for her, And upsetting for the rest of us to know that She felt like she was going to be forced into a memory care facility. So, in 2015, she and my dad, uh, Moved to where I am in, in western Washington To be closer to me, because her disease was progressing.

She’d had, She’d had issues for about four or five years at that point. Um, and probably several years before that as well, but really noticeable for about four or five years. So they moved to Washington and about a year later, they went to a presentation by the Palliative Care Institute at Western Washington University, and they saw a woman named Phyllis Schechter speak.

And she has the, uh, the, kind of the seminal V CED experience book called Choosing to Die. Uh, so she spoke about her experience with her husband, Alan, who had Alzheimer’s. And they, he opted to do V CED to avoid the last stages of Alzheimer’s. And my mom came out of that presentation, like, called me that night and was like, I want you to come over tomorrow.

And I went over the next morning to their condo, which was pretty close to me, couple miles away. And I was like, what’s going on? And she was like, I know how I’m going to die. And I was like, what? Like, so, so we had lots of conversations. Uh, my family attorney, it turns out happens to be one of the experts in Washington state and in the country, um, on legal, uh, issues and how to legally do, you know, set yourself up with paperwork and such for VSED.

And so my parents ended up working with her and working with their, um, their doctor. It was kind of an education process. Um, the doctor wasn’t sure at first that he was going to support, but what was really important was that my mom went to him in 2016 or early 2017 and said to him, here’s how I want to die and I want you to support me.

And he was like, Oh, okay. But what they were doing was they were establishing her capacity to make decisions for herself. And she was saying, this is my choice. And that was the really important step that she took was telling everyone what her choice was early on finding an attorney and telling her doctor.

Diane Hullet: Incredible. So it’s like she, she heard Phyllis Schachter speak, and that was an inspiration and a clarity moment for her. And then multiple conversations and multiple pieces being put into place in order to really carry this out as a reality. Yes, 

Kate Christie: the research took place. I was brought on board as kind of a research partner and like an assistant.

Um, I’m a writer. I do, you know, I was a technical writer for a long time. So I was like, yes, I can do this research. I can help with this. I can find out answers. And, um, and I think for me. That also was a way to control the experience, which of course you can’t control it. The illusion of control over my mother’s impending death.

Diane Hullet: But almost like find out as much as you can is how you felt. So that you could be as prepared as you could be and what I love is that out of that experience and with this background as a technical writer, you then said, I’m going to write this book where other people can understand it. And so actually, yes, it’s your personal story, but not in the same way Phyllis’s book is and I’ve.

Book as well. This really is much more of almost a pragmatic handbook. Like, here’s what you need to know. Here’s what you need to line up. Here’s what we found out. Say a little bit more if you would about the legal piece, because I did think that was really interesting. How, what, why do you have to have something legal, you know, as a established baseline?

Why do you have to 

Kate Christie: have that in place? Yeah, not everyone doing VSED does, but people who have any sort of cognitive decline, that’s where you have to have, you have to be really careful because decision making capacity is huge for folks. Once you’re diagnosed, even with mild cognitive impairment, the world kind of looks at you and is like, oh, you can’t make decisions for yourself.

My mom was like, I am still the same person. So I’m forgetful. I’m forgetful. But I am the same person I’ve been for 75 years and I have never wanted to go into care and that’s not going to change. Um, and so for her having Alzheimer’s, having the diagnosis, it meant that there were questions around her capacity.

Now, folks who have Parkinson’s without dementia, it’s not quite the same thing. Someone with ALS, where there’s no cognitive decline, it, it’s, It’s less important, but for people with dementia, where VSED is the only option, it’s not the only option, it’s one of the only options. I, I need to correct myself. I often say the only, I’m like, no, no, no, it’s not.

There are other ways you can do this. They’re just more proactive ways. VSED is sort of a passive way. You’re not taking in food and drink, which is a right that’s been established by the Supreme Court. You do not have to take medicine, food, drink, if you do not want to. But again, the Supreme Court says you have to have the medical capacity to make that decision.

And so that’s why it’s so important to get an attorney on board to write a statement. I think I included the sample statement in the book. Um, there was a release of liability that our attorney had everyone fill out who was involved in VSED because again, she had dementia and there could be questions that come up if someone in the family didn’t support it.

And this happens, I know Phyllis talks about it in her book, I don’t think it was a family member for her, but someone disagreed and called the police and the police sent Adult Protective Services. We had a mild, minor experience with that as well. And so it’s really good to have your paperwork, the statement of intent, release of liability, in cases of dementia particularly.

Diane Hullet: Wow. And that’s, that’s to protect you, your dad, the hospice people who were involved, the nurse who was involved, just simply saying nobody has coerced this to happen. This woman has chosen to hasten her death. And we’ve lined that up by saying so. So from the, and actually, 

Kate Christie: And actually, one of the really important parts, too, was recording a video where she was on camera before she, you know, went, like, this was 2017.

We did it right up front when she was still really herself, like, 100 percent herself still. There hadn’t been much decline, and she was on camera saying, I’m choosing this because I watched my mother go through this, and I do not choose to go through that. And also, I don’t want to live in a care facility where I don’t know people and I don’t trust them, where I could very well, if I develop an anger, you know, a lot of people with dementia go into rage.

And if that happens to me, they’ll strap me down, they’ll medicate me. I do not consent to any of that. 

Diane Hullet: Wow. So a video became a really strong tool. Was the video primarily for like adult protective services or for you all to remind yourself or for her to remind herself? 

Kate Christie: I think all of the above. We actually, on the recommendation of our attorney, we also recorded like a short one minute video where she was coaching herself saying, Jane, you’ve chosen VSED.

Keep going. Otherwise you go into a care facility. Okay. And, and it’s herself. And the reason that that became important was that as you dehydrate, like, that’s by dehydration, your organs break down, you, you become kind of like, you hallucinate a bit. And so that did happen probably around day, I don’t remember now, maybe, Day six or seven.

Diane Hullet: Yeah. That’s sort of a 

Kate Christie: stage, not a stage, but it’s a piece or can be a bit. So you can get really confused. And so that happened with mom and she got confused. She was like, am I done? Am I not done? What’s going on? And so my aunt was there and my mom couldn’t really see at that point, but my aunt played her video for her a few times.

And it was like, remember Jane and it’s her sister, like her best friend. They were, they were absolute best friends. And. And so she played it for her and she was like, this was your choice. This was your choice. And my mom was like, Oh, okay. Right. Right. I was out walking dogs. So I wasn’t there for that, but 

Diane Hullet: so incredible.

So from the time your folks went to the Phyllis chapter talk and your mom got inspired, like she had such clarity about it. And then quickly y’all got on it in terms of these kinds of pieces in place in the videos. And then how long was it until she actually said, okay, today’s the day. It was actually three years.

Kate Christie: Yeah, so I mean, kind of two and a half, because it was, we got all the paperwork done in early 2017, and in late 2019, kind of the fall of 2019, it was pretty clear where we were headed. Um, we, her social worker at the senior clinic had told my family of, Myself, my wife and our young children that we, mom was sundowning so much that we couldn’t spend any time with her after about two o’clock and during the day and we had kids who were going to school and so we were seeing, we were only able to see her on like Saturday mornings and Sunday mornings and that was like a huge shift, um, And so it was pretty clear where it was headed.

And so that fall, she was like, she and my dad talked and talked and talked and talked and cried. Spent every night for a month, I think, crying in bed and talking about it. And finally they were like, it’s time. It’s time to go. Our attorney had this wonderful saying and such a difficult saying. You have to give up.

Oh my gosh. I’m getting a little weepy. Sorry. You have to, you have to give up good days. to avoid bad years. And so it’s never going to feel like it’s the right time for someone with dementia because they have to leave while they still have capacity. And that means they have to, and that was the hardest thing for my mom.

At one point during V CED, um, a social worker from hospice came to check in with her. They accepted her about halfway through, because Four or five days into VSED, you’ve done enough damage to your organs that you can’t, you can’t stop. You, you can stop anytime in those first four or five days, but once you kind of hit the point of no return, and then hospice accepted her at that point because she was going to die within six months.

So she was part of hospice and they came out. And my mom was crying and the hospice person said, what’s, you know, what’s wrong, Jane? And she said, I just don’t want to leave my family. It’s, this is the right decision. I’m not wavering. I just, I’m so sad to leave. And so it takes a lot of fortitude and it takes, I think, kind of an iron will.

You know, my dad is. He’s making the same decision for himself. He’s facing some health issues and he’s, he’s saying that he wants to do what mom did. Um, and, and that’s, he’s got the will to do it too. And it’s, it requires that kind of steadfast will, I think. 

Diane Hullet: Well, that, that statement, you have to let go of some good days, give up on some good days in order to not have the bad years.

I think that is a huge, huge statement. And I got teary when I read that in the book, because that’s the kind of big picture thinking that’s difficult to do for any of us. Because I think people who choose these said. It isn’t that they want to die. They’re not, it’s not towards death. It’s that the life that they’re moving into is, is going to be pretty unmanageable.

I mean, that’s such a lightweight word. It’s, it’s intolerable by their own standards of what they wish to choose. And so 

Kate Christie: they’re dying, right? The end game for Alzheimer’s is death. Yes. Like my grandmother, her body started to shut down, like, She couldn’t really remember people. She was in a facility for seven years.

She had no freedom. She had no quality of life. She had been a teacher, a reader. She had none of that left, and her body basically forgot how to do things. Like, the decline in her brain was so And I think we forget that dementia is a terminal disease. It is a terminal disease, and the end is terrible. It is for most people.

It’s just not anything that I would want to go through, it’s not anything my mother, my father, anyone in our family would choose for themselves. And there, and it’s, I think it’s freeing to know that there is a choice out there, because VSED might not be for everyone, but knowing that you have the option can sometimes, it’s like when you have kids and you give them a choice, right?

You’re like, you can choose this or this. And they may not. choose the thing they really want, or they might choose it, but they have the power of choice and it makes them feel more in control of their life. And I think for people who are dying, having the choice of hastening your death, whether you make the choice or take it or not, it gives you control or the sense of control.

Diane Hullet: Yes. Understanding that it’s an option. And it’s so interesting. I bet that last two and a half, three years of your mom’s life was different because she knew there was an end game that she was going to have some choice over. And that’s really different than thinking. The agitation of thinking, I have no control over this, and this is going to be miserable because I’ve seen it be miserable.

Kate Christie: Yeah. Well, and to be, it wasn’t as easy as all of that. I think it’s important to be open that, um, my dad struggled with it. Um, he was losing his partner 55 years. And so, they, they got together when they were 19. And for him, it was, I remember at one point when my mom was talking about markers. Markers are, um, I want to die when I can no longer do XYZ.

And her first list of markers was like, when I can’t read Garden or Cook. And he was like, you can’t read a book so I’m supposed to let you die? No. Ah, nope, I am not on board with that. And she was like, Oh, okay. So I think for her, she would have done it probably 2018. And for the rest of us that was no, we were like, that is too soon.

We can’t we can’t. I don’t understand that thought. And I was really happy that she didn’t do it in 2018 because we got two more years, you know, of good, like, going up to the mountain and sledding with the kids and like, you know, hiking. We, we had a, uh, trail, uh, right near the recondo around a small lake that we would go around all the time.

My parents had this funny, uh, Uh, argument. Is it a lake or is it a pond? She would call it a pond, and he’s like, it’s too deep to be a pond, and they would just laugh, and the kids would argue, you know, and get in on the debate, and we just had so many touching moments and special moments in that time, and also we knew that the end was coming, and so it was a way to kind of appreciate our time together too.

But my dad really struggled. He thought about putting her against her will into a home, and that’s what it came down to when she was like, I will step in front of a truck if you do that. If you try to do that, I will. And we were in a car and I was driving and she opened it. We were on the freeway and she And I locked it really quickly.

I did a child lock because I was like, She’s like serious. She will not go into a care facility. Period. 

Diane Hullet: Yeah. 

Kate Christie: Um, and then he, and that was the month of crying, happened right after that conversation. And then he was on board, totally on board, totally supportive, once he understood, I think, what it meant to her.

And he was like, I love you and I’m supporting you. And that was really brave and hard for him. Um, 

Diane Hullet: brave and hard. 

Kate Christie: And that’s the point. Those last four months, she said, I want to have one more holiday with my family. I love the holidays. So we did one more holiday. And that was the point where all of a sudden she was like, ah, at peace.

She’d been agitated before because we weren’t sure if dad was going to come on board and he was her person. But once he was fully on board, she was just, one of her friends called it like a spiritual transformation. She became such a, like enlightened version of herself. It was beautiful. 

Diane Hullet: Wow. You, yeah, it’s so beautiful.

I love the way you’ve kind of talked about these nuances of how it unfolded because you talk in the book about the importance of assembling a team, right? And the team has some like key medical people on, on board. But in this case, like your dad was the primary team member and you and your partner were primary team members.

And 

Kate Christie: those people And my aunt, so my mom’s sister, who was her best friend, and also my in laws, my father in law ran a care facility for numerous years and his partner is a, um, an elder care attorney. And her mom ended up doing VSET a little while after that. Um, and so it was really, it’s just all in the family and so much support.

And my mom’s other sister, so supportive, had some health issues and couldn’t be present, but like just, Um, love and my cousins all were pretty close with my mom and they came to see her, um, December right before Christmas, her last Christmas. And she started VSED on February 1st. So they came for a last hurrah and it was just lovely.

The love, um, I don’t think you get that if you quietly commit suicide. You don’t get to have those special times with your family and, and VSED itself was a 10 day period. And it was. It’s hard. It was. Yeah. Really hard. Do you say, 

Diane Hullet: I want to circle back at some point, we’ll circle back to kind of who else was on the team and these kind of key family people, but I want to read this one section of the book because I think it’s so great.

You write. Yeah. To be honest, I didn’t believe a peaceful death from VSED was possible before I witnessed it. I supported my mother’s choice from the start, but privately, I was horrified by her decision to dehydrate herself to death. As the days and nights passed, though, my perspective shifted. By the end, I’d come to realize that VSED didn’t have to be the horrible death by dehydration, I had imagined.

For mom, it was the peaceful, meaningful end to a life well lived. That’s one of the main messages of this book. A good death from VSED is possible if you understand what death from dehydration entails. If you prepare accordingly, and if you surround yourself with a committed, experienced team, other than medical aid in dying, VSED can be one of the fastest, most painless ways to hasten death, assuming the patient receives adequate medical support.

Right. So I think that says so much, that it isn’t like, You know, you felt like, Oh, this will be great or, or the opposite, which I’ve, I’ve heard people say, Oh, V said that, well, that’s a terrible way to die. I know someone that was awful. Well, I think if it’s well supported and the team is in place and everybody understands what’s happening, it may be what people respond to when they say it’s horrible is that it takes time, but that’s just body naturally coming down.

Kate Christie: And it can be horrible. Like, I have a friend who had a parent, Duvy said, and this parent was, um, stopped drinking their nightly martinis the night before, and it did not go well. There was some, you know, there was, it was just really rough. And they were not medically supported well either. 

Diane Hullet: There’s something about, like in, in your mom’s case, she prepared, she really prepared emotionally and that took some real time.

And for your dad, maybe even longer. And she prepared physically because she had the good medical support. And so you describe in the book that she stopped eating sugar and alcohol months, weeks 

Kate Christie: before. Yeah. She doesn’t, she never drank alcohol. She was allergic to it. So, but sugar, she was addicted to ice cream.

Oh my gosh. So she stopped, Like a week before. Yep, so she stopped sugar 

Diane Hullet: like a week before, and then did kind of a cleanse and stopped food for a couple days. 

Kate Christie: Yeah, and actually went through a colonoscopy prep, so that everything was cleared out. She had a lot of problems, and hopefully she doesn’t mind me saying this, but she had some gas pains, and she did not want any pain.

when this was happening. She was like, I mean, I’m going to be dehydrating myself already. There’s going to be some discomfort. I don’t want pain. So she cleared her entire system out. I mean, I’ve done those preps. They suck, but. It was fine. She was like, ah, this is fine. Whatever. It makes so much sense. So she really 

Diane Hullet: prepared the body for what she was heading into.

And that helped. And then you had this great medical team as well as the family team. Talk a little about who else was involved. 

Kate Christie: So our attorney connected us with a death dealer. We initially had, um, uh, I think it was, um, oh, what’s that called? Nurse practitioner on board. And we contacted him in 2017 and met with him and he said, yes, I will prescribe some palliative care meds and I will come and help and be on board.

Um, so in that September, um, when mom made the mom and dad made the decision that she was going to have one more holiday. And then, um, we, we went to meet with him in October and he was like, I can’t support visa. I’ve had a family desk that really impacted me. And so I’m just not able to do this right now.

And we were like, Oh, okay. So our attorney referred us to Nancy Simmers, who is an amazing death doula in our community. And we set up a time to meet with her. And by the time we made contact with her, it was January. Like, or maybe just the end, right after Christmas, like right at the end of December. Um, and we, Had to meet on the phone at first there was a blizzard like we couldn’t even meet and so but she was amazing because within A month she had we decided to do 24 seven caregivers Partly because my dad and I wanted no contact with palliative care meds.

We already had a support an unsupportive family member We didn’t want any question that we had accidentally overdosed her like we did not want any Any medical liability. And so we wanted paid caregivers who are medical professionals to do all of that. And they did. They came on board. Nancy assembled a team of, I think, three caregivers, and they were around the clock once, not at first, not the first four or five days, but once mom was on the path and on the, on the way to death, um, we had them come in.

And they were lovely human beings. She got just these wonderful people. Um, and it, and mom actually died, I think I came in right after. And so one of the caregivers and my father in law were with her. She let go at the end when the house was full. My wife brought my children over. They were in the next room.

And there was laughter in the house when my mom died. Let go and went. Um, and I came in right, right as it was happening or right. It’s unclear right after. But, um, so that medical team was, they got us through, they held our hands, they held her hand. I don’t know how we would have done it without that support, honestly.

And I think other families can do that. And, and not everyone has the financial means. to pay for caregiving. Like, let’s acknowledge that this is a privilege. Um, and, and people in positions of privilege get to do this. Well, um, for 

Diane Hullet: sure, this was much, it was less cost than years in a home would have been.

Yes. So there’s that. It’s like, we’re spending some money at this and It’s less than it would have depleted her to be in a care home. So it 

Kate Christie: would have been 8, 000 a month to go into a memory care facility here. 8000 for the one that we could have, you know, gotten her into and I know there are less expensive places, but that’s what we were looking at.

And so, you know, a few thousand to pay people up front to help with this. Um, the other big message I would say that I took away from the experience that I had no idea I was going to have was Four or five days and I wasn’t sleeping well either and if you’ve ever been present at the birth of a child My wife carried our kids, but I was in the room that oxytocin that love hormone Just that floods your brain and then you feel like you understand everything there is to know about life, right?

You’re like, I know I know all I have seen the portal Right, right, right. I am now wise. Then that wears off a little later and you’re like, Oh, okay. It’s incredible when you touch these portals. I mean, yeah. Yeah, and that’s the same when she was dying. I felt the same like, Oh, I know everything about death, which of course I didn’t, but it felt like I, I understood something.

And the realization for me was that she took what could have been for her mother, seven years could have been shorter. It could have been longer. for mom, and she packed it into 10 days. She suffered less, I suffered less, my father suffered less. My dad is the kind of guy who would have gone and sat next to her in the memory care facility for as many hours a day, 8 or 10, that they would have allowed him to do.

And that would have been his life, too. And that’s suffering. Um, incredible. So, that was, yeah. She got it into 10 days instead of 7 years, maybe 10 years. And 

Diane Hullet: even, I actually even wonder, like, even maybe 3 months, right? Because there was something about that turning point after crying for a month for the two of them, and realizing, okay, wait, here’s the path forward.

It’s another holiday, it’s another Christmas, it’s another time. And there was a settling in her, like you said. So now it was clear. And that seemed to do something in her that released some of that oxytocin, otherworldly giant experience. 

Kate Christie: You’re right. You’re right. It was a long extended experience of that.

For the rest of us, I’m not sure my dad ever experienced that because to lose her was just The worst thing that’s ever happened to him, you know, um, and, but for the rest of us, I think we were able to kind of feel that special and, and the great thing about Nancy is, um, we’re not religious people at all.

Um, not even that spiritual, honestly, I’m, I’m probably more spiritual than my folks. And. Nancy was able to help us connect to some spiritual experiences with like, um, the night before we set started she brought in all the caregivers who were signed up and all the family and we sat in my parents living room and had kind of like a ritual almost where we talked about things and we sang some songs and she told a story about death and, um, and we all kind of.

We, there was this great song. It was, uh, now I’m not going to remember it, but it was like, we sing to Jane about Jane and we let her know we loved her. And when she was on her, you know, at the ninth day and her breathing was very rough and it was clear she was nearing death. We sang that song to her, and it was special, and there was a candle lit when she died, Nancy lit a candle that burned, and it burned and burned and burned, and we, um, did lotion and we had lavender wash for her body, and, uh, she didn’t really want to be naked, so we just left her clothes and washed, and we talked about her hands, all the years that, everything that her hands had done, we talked, we washed her feet, and we talked about, all the trails and paths and roads and places that her feet had gone.

And it was just this like, non religious but very spiritual celebration of her life. And that was, I mean, I mean I’ve read studies about how unless you touch your loved one as they’re dying or when they’re, when they’ve passed, it’s really hard for your body to accept that they’re gone. I didn’t let my children in her room after she was in a coma because Her mouth fell open and it was really hard for me to see and I wanted them to remember her not as this person who was gasping for breath like a fish out of the water.

It was really hard. It’s hard for me and I didn’t want my young children to have that memory. So they didn’t touch her, but they came in when she was, she was in her coma. She was no longer with us like coma wise, and they touched her skin and they held her hand and they sang to her. And so I felt good about that.

Diane Hullet: Yeah. So they weren’t there sort of at the more difficult sound and visual, but they did follow up at the end. Well, yes. I think that’s an incredible piece and I know Nancy and I are going to talk in the next episode about some of what she brought as a doula and I think yeah just said is such a beautiful piece because it doesn’t have to be you know ritual with a capital R.

To be meaningful in a secular family to say we’re gathering to honor and, and that does as a griever and as a person who’s just lost their mother or in your dad’s case, his best friend, like, or your sister, the aunt’s case, your mom’s sister, her best friend. It brings a human kind of closure to it that, that just matters so much.

Kate Christie: It does. It really does. And I would never have been able to predict that. And without Nancy guiding us medically and spiritually through this whole thing, it would have been a much different experience. So if you can afford a death doula and you have someone you connect with, then it’s just, it’s super, to me, that was, it was like having a birth doula.

Like we had one of those too. And it just made it an experience that I could kind of. It made an experience that I could tolerate, and not just tolerate, kind of do well with, which I didn’t think death would be something that I could have a good experience or a peaceful experience with. 

Diane Hullet: It’s like you were able to lean into it and be present and everybody showed up who needed to show up and, 

Kate Christie: and, 

Diane Hullet: and 

Kate Christie: there was no suffering and there was no suffering.

That was my dad’s thing. I don’t want you to suffer. I think you’re going to suffer, you know, and, and, and Nancy was like, I got it. We’re going to make sure she doesn’t suffer. We had, from my friend’s experience, where it didn’t go well, we knew, she did some research and she found out that if her parent had had haloperidol, which is an anti hallucinogenic, which you don’t give people with dementia if they’re living because, or planning to live longer, because it can really mess up their brain, but for people who are doing VSED and have dementia, haloperidol was like the most important drug we got on board.

along with an anti anxiety and then some morphine for the discomfort. And hospice came in and they were like, we’re just going to go ahead and up all of this because you’re not really giving her enough palliative, because we weren’t palliative care people. And they were like, we’re going to make sure she’s comfortable.

And so with hospice, with Nancy, with the caregivers, and with all of the preparation ahead of time, it was, It went well, as well as, as well as death can be, death is hard, it sucked, it was painful, I sobbed, I didn’t sleep, I didn’t eat very well, you know, I had to really think about some self care, going for walks every day with my dogs, in the forest, it was sunny, we were fortunate in February to have some sunshine, but it was a really hard experience and I don’t want to pretend it wasn’t.

Diane Hullet: I think that’s so well put. Like no, no fairy dust on the experience and it went as good as it can go. You were well supported and, and again, I just want to call out, you know, the reason Kate and I are even talking today is because she wrote this book and, you know, I think this book is just, it’s a fantastic practical reference book.

And, you know, you include this really informative appendix and the appendix says, here’s all the tips I’ve mentioned in the book. Here’s a VSED statement that my mom wrote. Here’s values worksheet. Here’s reflective questions, and here’s some books and websites, you know? So what I love about this book also is it’s very One of those slim books, it’s not a giant long read.

This is just, it really intended to be just, it is a handbook and it will tell you everything you need to know. So, well, gosh, Kate, I just, I appreciate your time and you sharing the breadth of the experiences. When I got out of this, like both the practical, what did we do and how did it roll out for my mom over from the decision to the timing, but also, You know what your experience was, and it was sad and hard and miserable, and it was her choice, and it played out well, and this is something available to everyone in a way that medical aid in dying simply is not.

So I think to put it on the table as a really valid choice, and to make it possible for people to learn more about it is so important. 

Kate Christie: Yeah. And that book was, um, I said to my mom, you know, I’m going to write about this because I’m a writer. This is what I do. And she was like, I really hope you will. I want, I want my experience to help other people.

And I was like, yes, legacy. Here we go. I can, I can walk forward with your legacy. It’s really her story. She was so strong of a person, like, and sometimes that was difficult as a child, but at the end of her life, we were just so close. And I, I can’t thank her enough for that gift. Because, as she became very clear at the end of her life, it allowed us to heal any of our wounds that we had from life and be together and, and just, she left in love, you know, and it wouldn’t have been like that if she had gone into a memory care facility and languished for seven years.

There would have been nothing of her left. 

Diane Hullet: Nothing. 

Kate Christie: She did not want that, and I respect and admire her decision so much. 

Diane Hullet: So much. Well, Kate, how can people find a copy of this book? 

Kate Christie: Yeah, so they can go to my website, which is katejchristie. com. Uh, it’s also on Amazon. Uh, so if you just search the VSaid Handbook by Kate Christie, you’ll find links there.

Independent bookstores can order it, so that’s an option as well. Uh, if you want to do that, there it’s available in ebook and paperback. And I find the paperbacks probably a little more helpful for people because it’s tactile. Uh, it has an area where you can take notes. That was part of it is I wanted people to be able to write down, um, kind of what they, so at the end, there’s, there are some pages with lines where you can really write notes for yourself.

And it’s a place where it will always, your notes will always be. I found that as my mom was. Like making our plans. I would write notes on post its and then I’d be like, what did I do with the post it? Where I could find that. Yeah. Yeah. So this is one book when you’re planning this kind of thing, it can be really upsetting and difficult.

So you have a place for it. So I highly recommend the paperback. 

Diane Hullet: I like the paperback too. It also strikes me. It’s the kind of thing that needs to get passed around. Several people need to read it. Your whole team probably needs to read it. As you 

Kate Christie: assemble that group and figure it out. And you can share the notes with them that you’ve taken.

You can be like, here you go, look at the back, this is what I want, these are my choices for comfort care, this is, you know, what I do want, what I don’t want, temperature of the room, do I want plants present, do I want people around, do I want to party or not, and all of those things. Also, vcedresources. com.

If you purchase a book, um, we have a resource page on there and it’s a group I volunteer with and Nancy Simmers runs, um, along with Andrea, um, who was also one of the, uh, Death Stoolers who helped with my mom, Fenwick. And so they are kind of the co executive directors of this group called vcedresources, Northwest.

Vcedresources. com. It has a A bunch of stuff. If you follow the link to my book from there, the group earns a commission. 

Diane Hullet: Oh, fantastic. That’s a great, wonderful, wonderful website. You can find out everything you need to know there. And, um, yeah. Wonderful. And as always, you can find out more about the work I do at bestlifebestdeath.

com. Thanks again to Kate for this really, um, personal and moving conversation. 

Kate Christie: Thank you so much for having me. We just wanna get the word out and let people know they have choices.