Podcast #146 VSED Part 2: Understanding Voluntarily Stopping Eating and Drinking – Nancy Simmers BSN, RN, Death Doula

Nancy Simmers served as the death doula for Kate Christie’s mother when she chose VSED (Voluntarily Stopping Eating and Drinking) to hasten her death. How did Nancy’s path take her from working as a birth doula to becoming a death doula? How did her expertise grow over the years? How does she support the individual and the family in a VSED situation? What are the three typical parts of a death by VSED? This two-part podcast is an eye-opener on a subject that most of us know little about. Last week’s episode: a conversation with the daughter who experienced her mother’s death by VSED.

Transcript:

Diane Hullet: Hi, I’m Diane Hullet and you’re listening to the best life, best death podcast. I’m really excited about my conversation today with Nancy Simmers. Hi, Nancy. Hi, 

Nancy Simmers: Diane. 

Diane Hullet: So last week I talked with Kate Christie and Kate’s mother went through voluntary stopping of eating and drinking and really a key member of their team or their family during that experience was Nancy Simmers.

Nancy’s an RN and a death doula. And, you know, I just think you have so much to offer my audience here on Best Life Best Death about what is VSED, Voluntary Stopping of Eating and Drinking, who accesses it, why is it a thing that people are starting to learn more about, What are the barriers to it? And, you know, let’s just dive in a little deeper to what their family’s experience was and other people you’ve spoken with about this.

So there, I’ve laid out like 12 questions in my intro. Let’s just start with Nancy, with your background. We were talking before we record how you were first a birth doula. 

Nancy Simmers: I was I, I got into nursing after being in the Peace Corps and I had been a teacher of English in the Peace Corps in West Africa.

And I came, came back to the States thinking, I want to work with, in women’s health and maybe I should be of a midwife. So in order to qualify for that. I went to nursing school, did four years of nursing school and then said, okay, let’s not do the midwifery right now. Let’s have a baby ourselves and, and and then work with moms and babies.

So most of my. 35 year nursing career has been with moms and babies. I worked with really high risk moms and, or, or babies who, because of low birth weight or whatever were, were at risk. And I, and I loved the, the teaching and the one to one connection The that trusted relationship and and gentle resource and counseling that that that could happen under those circumstances.

It was very easy from from going to an employed nursing physician like that to thinking, you know, I think I want to volunteer as as a. birth doula, because it would be so wonderful to be with parents from the very beginning. So talking with parents about childbirth and what labor was, was going to be like, and what postpartum period that, that was, that was all wonderful.

Always a an, an enormous satisfaction because of the intimacy. 

Diane Hullet: With the connection, with the families, with the baby, with the process. Yes. You were talking before we hit record too, like it’s, it was very physical, you know, it’s the holding hands, it’s the presence, it’s the being near somebody. And then when you transitioned to death doula, you found it was so similar.

Nancy Simmers: So similar. So similar. Let me talk just a little bit more, more about, about that when my I’m gonna start with, with the the, with the underlying premise that I have, which is that my hope would be that we as a society reach the point where we plan for our own death. In the same way that we plan for pregnancy and for parenting because looking at it as a natural process and reading about it, talking to them, to people observing how other folks have, have done it.

I really believe it’s the last lesson that parents give their children is to teach them how to die. 

Diane Hullet: Oh, beautiful. Yeah, yeah. So the parallels there are beautiful. And 

Nancy Simmers: then bringing, bringing family birthing is, is a family experience. Dying is a family experience. It’s, it’s a, both are totally transformational, transformational as a, as a family, as a society, as, as an individual, because we’re transformed in birthing.

We, we, as spirit come into our body, at least that’s what I believe. And, and in, in dying, We transform back into into to spirit and and we and we leave the body. When a woman’s in labor, I encourage her to talk to her body because it was a when I was very a very young woman and I was talking to a very old 65 year old woman she She said to, to, to me, I was pregnant for the first time and I was worried about what this was going to be, be like, and how much pain and discomfort it was going to be.

And, and very wisely said to me, Nancy, You have a very ancient body. This body has been around for a million years or so. It knows how to give birth. And I’d love to tell that story to people who, who are in the process of giving birth. dying and leaving their bodies. And I say, your body knows how to do it.

You’ve got to trust that body. It’s a matter of release. And isn’t that what we say to birthing women? Relax, release, let go. And that’s the same thing that, that, that we tell people as, as they’re dying. 

Diane Hullet: Incredible. 

Nancy Simmers: So I do go on, but, but that’s, yeah. 

Diane Hullet: That your vision is really, how would people, you know, again, in the way that we sort of prepare and read books and talk to people and hear their stories and make a plan as best we can.

And then we go through with the birth and we move on into parenting like that, that same sense of elongated time. And, And we can rely on the wisdom of others who’ve come before us. I think, I feel like we sort of got, you know, in our, in our, I’m just going to call it our sort of secular modern culture.

We got kind of cut off from our stories about how death has that elongated time. We. We maybe have a disease process or we age and there’s certain markers where we can say, oh, this is changing and we’re heading towards an end. And that end is a transformation, but we’ve stepped away from that. It’s really, it’s really interesting.

So as you said, there’s just not the familiarity, you know, you and I are swimming around so much in this kind of end of life world. I start to think it’s really normal. And then I get on an airplane or I go to Party of some sort. I start talking to people and I think, Oh, yeah, not talks about this. I forget.

Nancy Simmers: Exactly. And then they back up a little bit. 

Diane Hullet: Or they lean in. I think that’s interesting. Oh, love. Yes. Yes. Wait, I gotta tell you my story. Well, tell us about, you know, you got involved with Kate Christie and her mom and I don’t know. Do you want to start more broadly about VSED or do you want to talk about their family?

You choose. 

Nancy Simmers: Let, let me just do a, a real quick overview about voluntarily stopping eating and drinking. V S E D. And it’s pronounced V SED. It’s a, it’s a, it’s a process. Another one of those processes of stopping all fluids and all food in order to end one’s As with any process, there are ways of, of preparing for it that, that are, that are most, most helpful, but, but before I get into that, let me talk just a little bit more about who might select that option.

So it’s, it is above all an end of life choice. There are, as you know, 10 states and the District of Columbia that have what we call death with dignity laws, medical aid in dying. That allows a person to, to take a medical cocktail, to ingest it and and their life in that particular way. Last time I checked, there were at least 40 other states and provinces and, and islands and territories that don’t have access to those medical aid and dying laws, and therefore the only legal option that people have if they are in such severe pain that, that they have no quality of life and no longer want to continue their lives.

Their life or if they have a disease process that may not be terminal, but that, that again, affords them no quality of life so that they want to end their life. So their only legal option is, is for to do voluntary stopping eating and drinking. And then this 10 states, like, like I’m in Washington state and I happen to be a volunteer for end of life Washington.

I help people access and qualify for and use medical aid in dying. But there are a lot of folks who don’t qualify because they don’t have a terminal disease and they aren’t Within six months of of their death, which are the qualifications for hospice and people must be on hospice. 

Diane Hullet: So who would who would access?

Nancy Simmers: Right, right. So medical aid in dying requires that that the person have a prognosis. of six months or less, and also that that they have a terminal diagnosis. And since there are diseases like multiple sclerosis or Parkinson’s, other degenerative nerve diseases that don’t fit either the prognosis or the terminal one can live indefinitely and for a long time that way, then be said would be the, the, the option for them.

Diane Hullet: Yep. Yep. That makes sense. So it’s, it’s a legal way to hasten your death. What I think is interesting about it is it, you know, people ask, is it suicide? And my response is, you know, Suicide is often impulsive or it can have a plan to it, but there’s, it’s often a solo act. It’s often not something that the family participates in or friends understand is happening.

And so there’s a quality of aloneness to it that I think is really different than VSED. And so VSED is more a process of a natural shutting down of the body rather than a intense one single act. 

Nancy Simmers: Yes. Bottom line for me is People who, who commit suicide don’t want to be alive. They don’t want to go on living.

And I talked to people every week who would love to stay in life and find it absolutely intolerable, given what is going on with their body. And so they’re having to make they’re having to make a choice and they are choosing of their own volition. And because they still have capacity that, that they are willing to stop eating and drinking in order to do that.

Diane Hullet: Yeah. Yeah. So how did you become involved with Kate’s family? Well, I guess she described it. She said they had a palliative care doctor lined up who was planning to help them. And then shortly before her mom was really going to opt for that, that person had to back out for a variety of reasons, I think.

And so they were led to you. And what was your role on that team? Well, 

Nancy Simmers: I kind of defined the role of a doula as a mixture of fairy godmother and case manager. So I see my role as accompanying a person through whatever process they are choosing at the end of their life. And I see myself as, as the supportive person to.

Gain from them what it is that they want, and how they want it, and what matters most to them. And then based on that, helping them put together a plan. My yeah, I can tell a couple of stories about being, being with Kate’s family. When I met them, the whole family was, was gathering. And to tell you the truth, I couldn’t, at the moment, tell who was the person who, who was beginning to have some Alzheimer’s and loss of, of memory because her mama, who did have the diagnosis was, was just the penultimate hostess and, and carrying on this beautiful conversation, interacting, perfectly, normally talking so easily. 

And but she had this diagnosis. She had seen her mother live and die with, with dementia and Alzheimer’s, and she was not willing to go down that route herself, nor was she willing to put her family through, through that. And therefore she She wanted to begin. I believe Kate’s mentioned that, that this had been a, a, a decision that had not come easily, that the family had had to talk about it.

over almost a two year period of, of time. So when I came onto the scene, the decision had been made, but there were still bits and pieces that needed to be pulled together. Lots, lots of questions about what the process was going to be like, because there are a lot of myths about the set, myths of, of it going on interminably.

And that it being very, very painful that there was lack of support that, that people wouldn’t would get to a point where, where they’d, they’d be unbearably hungry and, and uncomfortable and, and that no medication would, would be offered them. And that’s, that’s just simply is not true. The average length of.

Of a visa process is between three and 10 days. It can go as long as as two weeks or more, depending on whether or not there is fluid added and taken taken into the body. The body can can last a long time without food. We do have these fat stores. But. We, we can’t survive long without water. However, just a few tablespoons of water every day can keep us going.

Diane Hullet: Amazing. Amazing. I think it’s so important that you stated those myths up front because I think that really there’s a lot of misinformation out there and one of my goals with this podcast and this subject on the podcast is to put. Information and education out there and say, you know, it’s almost like middle school, like, don’t believe everything you hear, because a lot of it, you know, where did you get your information from, there’s facts here, there’s a, you know, there’s a clinician’s protocol to follow that can talk about what is the best supportive way to do this.

So, yeah, those myths are, they’re kind of endemic, aren’t they? They carry on in the culture. Yes. And I 

Nancy Simmers: think that some of the myths, Diane, come from people seeing their loved one, their grandparents, in the end stage of dying. You know, maybe they’re on hospice, or in the hospital, or dying at home. The, and the end stage of, of dying is people aren’t eating.

They’re in and out of consciousness. They, they may be be making the, the change, stroke sounds, which is not distress. I mean, it’s stressful to hear, it’s not to stressful to the person who’s dying. It’s an accumulation of. fluids in the back of the throat, and, and there is not the ability to cough and clear the throat, so they’re sounding like that.

And it’s not a pleasant sound, and, and a person can be turned, but, but I think, I think that’s, those are the associated picture. of death and dying, and that’s the last third of a VSED process. That’s the universal actively dying process. There are two other thirds to the VSED process, and let me just briefly explain that.

Once a person just decides to voluntarily stop eating and drinking. There’s a fair amount of, of legal work that, that needs to be done. There’s, there’s getting either onto hospice or more likely just notifying hospice that one is intending to die using VSED and that on day two or three, they would be back in touch with hospice to be admitted because by then a person is terminal.

If they proceed with VSED, they’re gonna, they’re gonna die. So they are terminal, they are eligible for hospice at that point. It’s also important to, to gather caregivers and family support so that, that inner circle of, there’s, I like to describe it as, as a, as a, as a blooming flower, the very center of, of the rose or flower is.

Is the person and the pedals right around that are totally supporting the center are, are the beloved friends and family who agree with the decision and are willing to support the person in, in this process. I I don’t want to get too far afield here, but I, I really encourage family members. To hire caregivers and to do the work and, and for family members to share the responsibility of emotionally supporting the person who is, is doing the V said.

In order to be that supportive person, they need to take care of themselves, which means they need to leave the premises to eat and drink and sleep and then come back and be effective support system for their beloved. 

Diane Hullet: That makes so much sense. You, you were saying, let’s go back to you said there are three stages or kind of three.

Nancy Simmers: Right. So, so that’s the, that’s the preparatory stage up to the first stage. Thank you. And, and when a person chooses a date and has gathered, So the paperwork and and a supportive family and and have contacted hospice. Then the date is chosen and and it begins. I encourage people to reduce the amount of food that they eat over a period of at least three to five days and and end up with something as as small as as a hard boiled egg.

On the on the day before and and to make sure that that they’ve had some regular bowel movements, excuse me for bringing up bowel movements and the program but 

Diane Hullet: you’re a nurse, what else are you going to bring up. 

Nancy Simmers: Think of it in this, this way any, any undigested food and in the GI tract isn’t going to go anywhere, it’s, it’s, it’s gonna cause constipation and discomfort.

It’s weird. So let’s get it cleaned up. And so if when all of that preparation is done and the person begins, they’ve got a couple of days when, when it’s sort of like, like having a bad cold and, and, and you’ve got some energy, but you don’t feel like eating or drinking. And so what are you going to do?

And some of the sweetest Memories that, that I, that I have of working with Kate’s mama and, and her family was the whole, whole family on, on the couch watching movies. Jane was, was able to sleep at night in, in her double bed with, with her husband for the first two nights. And the, the third day I, she was getting a little wobbly on her, on her feet.

And I said, honey, It’s, it’s time for you to, to move into, into the hospital bed. So, so there was that. And another precious, precious experience was Jane was remembering that she couldn’t eat or drink. And food doesn’t become a particular big thing with the decrease of, Food in preparation for visa, the tummy shrinks and you don’t, don’t feel particularly hungry, but important to keep the food smells out of the house.

So that isn’t, isn’t a problem. But Jane wanted to be around water and a daily shower was, was something that she could look forward to and was very soothing to her. And, and I think it was the third, third day that I, I took Kate and her mama. We walked her real carefully with a walker down, down to the bathroom.

And Kate and, and her mama got out of clothes and into the, in, into the shower and, and Kate held, held her mom. They, they sat on the little, little shower bench to, to together, and she held her mom and, and just water flowing all over them, and it was so, so soothing for, for the, the two of them. So that’s, that’s the time.

That first, that first third of the experience is, is the time for support and encouragement explaining to other family members what’s, what’s happening, what they’re going to be looking at in the next few days, just doing all kinds of of lovely things for, for the person lotioning their, their hands, keeping their mouth moist and lips moist with, with nice creams and lip glosses and, and little spritzes of water in, into the mouth.

A dry toothbrush to kind of keep the, the gums Most people don’t need medication at, at, at this, at this point, but they do need 24 hour care because as anybody who, who has had the, had the flu or a bad cold and not felt like eating or drinking for very long, you get woozy. And this is not the time to be falling and breaking a limb because that would just be the end of the world.

A lot of things. So that period of time is, is two or three, maybe four days. Certainly during that time hospice is connected to say, my, my person has now started the process, and we would like to apply for hospice care. Most hospices, at least here on the West Coast, are willing to take a person into service at that time, which is wonderful because it means that as a person comes to require medication, It is available and there are wonderful services available, a social worker, a chaplain that can can be very, very helpful for for the individual and their family and our, our hospices have offer holistic medicine, an acupuncture and massage that can go a long, long way to giving lots of comfort.

So this, that, that middle, that middle section is a tough one, and I liken it to active labor. In fact, I tell, tell families of the, that the first half is sort of like, my job is to slow it down. It’s like, Like waking up and your membranes have broken and you’ve felt some contractions. And oh my God, you’re just so excited because, because baby’s coming, you know, it’s going to be, it’s, it’s happening.

It’s happening. And it’s like, no. We’re going to slow this down. We’re going to be really present for, for one another. Kate’s, Kate’s family talked with her and read her favorite books, sang to her, just showed her pictures. This is the slow time. However, this midsection, people are getting Tired. It’s like clicking into active labor and, oh, this is what a contraction feels like.

Another one’s coming. And it’s, and again, it’s not, it’s not necessarily pain. I’m not going to lie. There are some people who, who do feel pain of constipation and do, do feel pain in, in, in their, their throat because it gets, it gets so dry and, and, and parched, but it’s sort of like, Oh, this is work. This takes all of my attention to, to get, get through this.

So a person in this middle stage is, is going to be working hard. They’re going to be sleeping a lot. They’re going to be in and out of maybe in and out of consciousness, but, but definitely sleeping more. They’re going to need a medication at this point. And the medication that is usually used is Morphine and that can help with the breathing that can help with, with the easing of, of, of any intestinal discomfort, but also so important to be turning the person, anybody who’s been in bed sick for three days, your body’s sore.

So turning frequently, massage, nice lotions on the body, all of, all of that, that, that happens. And This is also why I, I suggest caregivers for around the clock, because for family to sustain that 24 seven is not is not realistic. I’ve, I’ve had some families do that. And it is possible, but it it really takes a toll.

And I think it affects end stage grieving. Of the family. 

Diane Hullet: Yeah, that makes sense. They 

Nancy Simmers: just don’t, they just don’t have the resources. And so all and, and then the, the person over time turns over into an actively dying stage. Which, which can be two, three days, and by then family can feel pretty, pretty raw.

You know, they’re, this is not the time to be saying goodbye. You know, that was, that was earlier, but it’s, it’s all hands on deck. And let’s, let’s be here to support each other as well as to, to support the family. That’s a very kind of quick review of all three stages, but that’s kind of, that’s how I’ve experienced it with what I, what I’ve, I’ve seen.

Diane Hullet: Yeah. It’s really important. I love that you’ve laid it out. It’s really, there’s a preparation stage. Then there’s this kind of a beginning. It’s not so difficult and I’m still ambulatory and then this, Oh, this is really kicking in and then active dying. I think that’s really important. I think one of our fallacies, one of our myths.

It’s is, you know, let’s blame Hollywood. Why not? But you know, this, this saying that Barbara Karn said you know, hospice pioneer and educator, she says, people don’t die like they do in the movies. And we do, we have this impression that it’s a, a short process or it should be as short process and like, my gosh, if it goes on for two days, we just think something’s terribly wrong.

Well, this takes time. This is an elongated situation where the body stops doing everything it’s been doing for however many years. And so 

Nancy Simmers: we have amazing bodies. And like the, the like the Bible says, we, we are, we are, we are magnificently made and, and our, and our bodies maintain a brain, lungs, and heart.

And I won’t spend a lot of time talk, talking about the process of dehydration, but, but it, but it, it, it, it makes, it makes sense why a person turn, you know, has, has a changes, changes color becomes cold. It’s like everything is shunted down to keep the brain, the lungs and the heart work, working. It can last a long time.

It helps. For families to know that and that, that’s part of what I see as, as my job to, to really be, be with, with family every, every day and to explain what they’re, what they’re seeing and what they’ll probably see in the next 24 hours with their loved one. 

Diane Hullet: Well, as we, as we talked about last week, Kate’s book, the V CED handbook by Kate Christie, widely available.

You can get it at vcedresources. com. 

Nancy Simmers: Also available on Amazon. 

Diane Hullet: Also on Amazon. If you go through V CED resources, they get a little cut. And if you go through Amazon, I guess Amazon gets the cut. But you and I were also talking about that last year in the Journal of Pain and Symptom Management, clinician guidelines were published.

Do you want to say a little bit about that? I’ve got a great memory, Diane. Yes. Here’s my memory. It’s a post it. 

Nancy Simmers: I love it. There are several barriers to VSED. One has been the terrible myths about it and the lack of good information about VSED. The other huge barrier has been that there have not been clinical guidelines.

For those of you who aren’t involved with America’s medical system, a clinical guideline is sort of a how to instructions for a disease process or a medical process. And because there have not been nationally recognized clinical guidelines for voluntary stopping eating and drinking. It’s been hard to get support from medical providers for VSED.

That’s not been the case in Europe. For instance, in 2014, a group of palliative clinicians in, in the Netherlands put together a, a marvelous clinical guidelines. Based on, based on research, they’ve been referred to and used here in the states. But again, they aren’t patterned for America’s healthcare system.

So over the last two years a group of clinicians, and I got to be part of it because I made a big noise. And it happened here in Washington State. But clinicians, one from New York, and one from California, and one from Oregon, and two from, from Washington State we zoomed during COVID, and wrote clinical guidelines for COVID 19.

And they were professionally written and submitted to the Journal of Pain and Symptom Management, which is a well recognized medical journal. And they were published in August of 2023. And they are free and accessible if you go to the website for the Journal of Pain and Symptom Management. They are also downloadable.

The guidelines are downloadable from the website that Diane just mentioned. And that’s V S E D resources.

That’s the, that’s the website that I helped organize and that Kate, Kate was our, our webmaster and took all of our materials and put it together so, so beautifully. So it’s on the homepage, the link to the guidelines. And I, and I really commend that. That anyone who’s at all interested in, in VSED or, or anyone who’s even thinking about doing VSED, download those guidelines and take it to your provider and say, Here it is.

Diane Hullet: Fantastic, Nancy. Well, I think that’s a fantastic place to end on because it, it gives people a place to really go next with next steps and next resources. And so again, V said resources. com. And I, as far as I can tell, it’s kind of considered the resource place. And how neat, you know, that there’s a clearinghouse for all that.

And there are other really interesting visa books as well. There’s one written by a group of doctors. There’s one written by Phyllis Schachter, which is kind of a personal story of her experience. And so, Again, I go back to what you said I think it was early on or somewhere in the middle, you know, how do we get information?

What if we just normalized reading about this? What if we just normalized having a conversation, you know, asking your friends, what do you think about this or talking to your grown children? Have you ever heard of this? What do you know? Because I think part of My goal and Nancy’s goal is to dispel myths and get education out there so that people are making informed choices, not just kind of railroaded into some choice or choice they didn’t want, but making an informed choice about what, what your options are.

Nancy Simmers: Exactly, exactly. It’s, it’s not for everybody, but, but if we know about it, and we’ve, we’ve informed ourself, then we can make that informed decision. And if we, we were able to sort out our own feelings about it, so, so that if we run into somebody who, who is considering it, We can be more empathetic and open to, to what it is that they want because it is their life and their death.

Diane Hullet: So well put so that we can be a compassionate listener rather than a misinformed freak out gossiping family member who doesn’t know what to think. Something like that. Well, thanks again, Nancy. I appreciate your time and your expertise. Expertise and everything you bring to this conversation. As always, you can find out more about the work I do at Best Life.

Best death.com. Thanks for listening.