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Transcript: The complexities of medical aid in dying in Vermont

An episode transcript from Brave Little State. To access the episode feature, click here.

Note: Our show is produced for the ear. We recommend listening to the audio, and provide transcripts for accessibility. Transcripts are generated using a combination of speech recognition software and human transcribers. They may contain errors, so please check the corresponding audio before quoting in print.

Donna, Judy and Diane Fitch: They were a dashing couple in their youth. Stan was handsome with black hair. He was tall, dark and handsome. And she was short and blonde. Five foot two, eyes of blue. Yeah, they, you know, he was the local farmer. She was the local teacher, they got married at the Old West Church, it was kind of a classic romance. Elaine always had a twinkle in her eye. They both had great senses of humor.

Mikaela Lefrak: So what was the Fitch house like growing up? What were some of your earliest memories?

Fitch sisters: It was an active dairy farm, so there were cows all around, and could hear the compressor going in the milking house night and day. Hear my father calling the cows in the barn at night. 

Mikaela: Did you all grow up helping out on the farm?  

Fitch sisters: No, we were girls. Daddy always read to us when we went to bed. And, or he would make up stories. And they would be, you know, serial  stories with a different episode every night. And I can remember the smell of him, like cuddling up to him when he was reading to us. Well, I remember crawling into their bed and he'd be out at the barn but you could smell the hay on his pillow.

Donna Fitch: I’m Donna Fitch, I’m 70 years old, and I’m the oldest daughter of Stanley and Elaine Fitch. 

Diane Fitch: I'm Diane Fitch. I'm 68 years old. I live in Calais, Vermont in a little house across the road from my parents. 

Judy Fitch: I'm Judy Fitch Robert. I'm 63. I also live in Calais on land that was originally part of the family farm.

Mikaela: Stanley and Elaine Fitch — Donna, Diane and Judy’s parents — were married for 71 years. They lived their whole lives in the Calais farmhouse that Stanley grew up in. Their marriage had its flaws, but overall, it was strong, and good.

Mikaela: What did you learn about partnership from watching them?

Fitch sisters: They were Vermonters. Well, so were we. They could be quite quiet and stoic about, particularly about emotions. But you know, what I learned the most is that friendship is the core part of any marriage. Yes, exactly. Yeah. And if you don't have friendship, then it's going to be very difficult to make it through 71 years, for more or less.

Mikaela: As they got into their 90s, Stanley and Elaine’s health began to decline – a mix of heart problems and old age. Last year, within a couple months of each other, they were both put on hospice care. Stanley was 99, Elaine, 93.

Fitch sisters: So the quality of their life had really diminished. And Daddy, he loved being outside, he, you know, he gardened into his 90s, he would toot around on his tractor, he felt so proud that he kept the farm in good shape. And he couldn't do that anymore. So he would sit in his chair and look out the window and see all the things that he couldn't take care of, they couldn't do any more. They always said they didn’t want to linger. Yeah. My mother was saying that they wanted to go when they wanted to go, and they were ready to go.

Mikaela: On August 30, 2022 — a Tuesday — the family was gathered together in the farmhouse. Elaine had coffee in the kitchen. Later, Stanley joined her, read the funnies in the paper. Then, Elaine got hungry. They weren’t supposed to eat, so she let the girls know, it’s time.

Fitch sisters: We each took turns talking to them and saying whatever we needed to say for closure, but most of the closure was really joyful and loving and memories and jokes, and it was… it was a lot of laughter, sharing experiences. One of the things I love that Donna said was, she said, “We forgive you for the mistakes you made as parents and we hope that you forgive us for the mistakes that we made as your children.” And they did.

Mikaela: Stanley and Elaine were sitting next to each other in their recliners. They each drank a little apple juice, mixed with a lethal dose of drugs prescribed by a doctor. The family sang, and held their hands. Then, Stanley and Elaine Fitch died in the same way they lived — together.

Fitch sisters: My father was born in that farmhouse. He was born in the room where he died, well the next room over, but he was always in that farmhouse. And they’d always been in the same bed, and we'd spend nights there, we could hear them talking. They were of course deaf. So they were talking quite loudly. But you know, I love you, I love you, too. You know, it was very, you know, they had each other to the end. And I think that was also what they really wanted was to have each other to the end. Yeah. And that’s what we wanted for them.

And our gift to them was so that they can stay in their home. And then their gift to us was sharing the ending with us, but also giving us this shared experience. And that was the gift, that we have this for the rest of our lives. They chose the time, and they chose to go together.

Josh Crane: You’re listening to Brave Little State, Vermont Public’s listener-powered journalism project. I’m Josh Crane. Here on the show, we answer your questions about Vermont, our region and its people. Because we think our journalism is better when you’re a part of it.

Today, Mikaela Lefrak answers a question about medical aid in dying — that’s when a physician legally prescribes a medication that a patient uses to bring about their own death. Mikaela explores how the process works in Vermont, and shares stories from the people who support Vermonters in their final days.

Dr. Berry:  Death is a part of life. And, you know, we want to make it as good as it can be for people.

We have support from Vermont Public sustaining members — welcome.

Mikaela: OK. It’s time to talk about death. Specifically, medical aid in dying. It’s a process that’s only legal in some states — ten of them, to be exact, and Washington, D.C. Vermont legalized it a decade ago. Around that time there was a lot of debate about it, but the debate’s quieted down.

That silence is part of what prompted Charlie Bestard of Hartland to submit a question to Brave Little State.

Mikaela: Why did this topic interest you? 

Charlie Bestard: Yeah, I guess it is a little morbid. For the record, I’m not terminally ill or sick, and I’m not really obsessed with death or anything like that.

Mikaela: Yes, death can be terrible, and heartbreaking. But it’s coming for all of us, after all. And if we can prepare for it, shouldn’t we?

Charlie: I had this question swirling around in my mind for some time, so one day I figured, what the hell, I’ll just ask, and the rest is history. 

Mikaela: Charlie’s the first person I talk to for this story, and I hear something from him that I’ll go on to hear from every person in my reporting. Charlie’s lost someone he loves, and that loss changed the way he thinks about death. For Charlie, it was a friend who died of ALS.

Charlie: A very undignified, slow way to watch a friend go out. I don’t know whether he would’ve availed himself of that law or not. So those are all the things that are in my mind when I ask a question like that, and I wonder, sitting here healthy and happy, if I were put into that position, would I actually have the braveness, the guts to go through with something like that? 

Mikaela: Thus, Charlie’s question to Brave Little State.

Charlie: My question is about medical aid in dying. How many Vermonters use this option each year? And how does the medical establishment view it?

The basics

Mikaela: You’ve probably heard lots of different words and phrases for this concept of taking legally prescribed medication in order to die. These days it’s most often referred to as medical aid in dying. In Vermont, some people just call it Act 39. That’s the name of the legislation that ultimately turned into law.

You also might’ve heard the term Death with Dignity – advocates often use that one. People who don’t support it often call it “assisted suicide” or “physician assisted suicide.” Euthanasia comes up too. That’s also a term that’s more often used by people who don’t support the idea.

Toni Kaeding: It’s not so complicated, but there’s lots about medical aid in dying, and Act 39, and I use those two terms interchangeably.

Mikaela: Toni Kaeding is a retired nurse who volunteers for a helpline, answering questions about medical aid in dying. The helpline is run by Patient Choices Vermont, the main advocacy group that worked to get Act 39 passed. Toni offered to talk me through some of their more frequently asked questions.

Toni: We used to get a lot of calls that were: “Why isn't this suicide? Aren’t you promoting suicide?” And I think over time, in my experience, with the calls, they have become much more informed, much more nuanced. They come with a basic level of knowledge, so that the questions are more sophisticated.

Mikaela: These days, she says she gets lots of questions like this:

Toni: “How do I move to Vermont? What’s the residency period for living in Vermont?”

Mikaela: The residency requirement is one of the many strict rules within Act 39. To qualify, you have to be at least 18 years old. And you have to have a terminal illness — meaning a doctor has determined that you have six months or less to live. You have to be able to make an informed and voluntary request, and be able to self-administer the medication. You also have to be a Vermont resident, which is the part that lots of people ask Toni about.

Toni: I guess the first answer is, if a person wants to move to Vermont to use this law, we really discourage that. It’s not the way the law was intended to work. And even if residency was established, it's pretty hard to find a doctor who is willing to accept a new patient solely for the reason of hastening their death.

Mikaela: There’s also a strict process for getting the prescription. You have to make two verbal requests to a doctor, at least 15 days apart. You have to make a written request in front of two witnesses. Then a second doctor has to confirm that you qualify.

It’s a lot to navigate. Toni tells me about what it’s like for her to talk to people who are trying to come to terms with their mortality, and, at the same time, manage the ins and outs of this law. It seems so hard. So I ask a question that’s been on my mind throughout my reporting. How do you deal with all this heaviness? And she tells me, gently, that I have it all wrong.

Toni: You know, I don’t approach it like that. I remember that when I was working with oncology patients, and these were the sickest of the oncology patients. People would say, “Oh, how can you stand that? Oh, just isn't that just terribly depressing? Oh, my gosh.” And my response then is pretty much what it is now. These are the most alive people I ever deal with. They understand where the importance of life. They understand the risk of losing it, and they are just the most real people with the most real concerns. And if I can help that, I'm so happy to do that. And I come away from those conversations maybe teary but oh my gosh, so grateful for my own life and what I have, so it's hardly ever a downer for me. It makes me grateful.

The pharmacist

Mikaela: Our question-asker Charlie wants to know how many Vermonters have used medical aid-in-dying since it passed. According to the Vermont Department of Health, only one person used it in the law’s first year, 2013. The next year, 5. The year after that, 16.

Fast forward to last year — 40 people used it. In total, 172 people have used Vermont’s medical aid in dying law to hasten their death. The state also keeps track of the diagnoses of the people who used it — as of 2021, more than three-quarters of them had cancer. Just over 10 percent had ALS, and about 5 percent had neurodegenerative conditions.

So 172 people, total. It's a relatively small number, compared to other states. For example, more people than that used medical aid-in-dying in Oregon in 2021 alone. But that number, 172, still represents a lot of individual people, each with their own full life and story.

And, rather remarkably, there’s one Vermonter who’s met dozens of them.

(phone rings)

Steve Hochberg: Hi this is Steve. 

Mikaela: Hi Steve, this is Mikaela Lefrak. I’ve been so curious to ask you so many questions. 

Steve: Ok, go for it.

Mikaela: Steve Hochberg runs Smilin Steve Pharmacy. It’s a family business – he works with his wife, sons, daughter in law, grand kids. Its Rutland location is the only pharmacy in the state that fills prescriptions for the medical aid-in-dying medication. Steve says he hand-delivers almost all of them.

Steve: I've got one tomorrow. 

Mikaela: How far are you driving? 

Steve: Tomorrow? About an hour. But I'll go anywhere in the state. We're central. So I can be anywhere within two to two and a half hours in either direction that I don't mind the drive. 

Mikaela: Making house calls allows Steve to answer people’s questions about how to administer the drugs. I ask him to talk me through it.

Steve: It’s a two step process, but it involves three medications. The patient starts with some tablets, which help with nausea and vomiting, and one that helps swallowing because you have to be able to obviously drink about three ounces of liquid that's kind of chalky. Patient has to wait about 20 minutes, and then they have this powder, which they're going to mix with apple juice, about three ounces of apple juice, swirl it all around, and then it has to go down within a minute or two. Within two, three, four minutes, you're going to be totally asleep, totally unconscious. And that will be the last thing you ever remember that you will now have the peace you're looking for. 

Mikaela: Every Vermonter, it seems, who spends time in this space — doctors, nurses, hospice workers, patients, their families — they all know Steve. He delivered the prescriptions to Stanley and Elaine Fitch.

Steve: That was the first time ever I had two people in the same household. It was a great, oh my god, they were just super people.

Mikaela: He didn’t tell me their names or anything, but the Fitch sisters confirmed he was talking about them.

And, like with almost everyone I talked to for this story, there’s loss in Steve’s heart, too.

Steve: My mom died when I was 17. And I saw her suffer from months and months and months, and went through all the stages of cancer. And it's so cruel. It's so hard on the patients. But it's also extremely difficult on the family.

Mikaela: In a way, Steve’s mom is with him in the car, every time he drives to deliver the medication. She’s the reason he’s a pharmacist.

Steve: Believe it or not it was my mother’s suggestion. I always liked math and science, and she was like, oh what about pharmacy? So I got involved. Unfortunately she didn’t live long enough to see me start college, she basically died three days after starting college. But I just love doing it, and said this is what I’m gonna do.

Mikaela: Steve’s been a pharmacist for almost 50 years.

Laws and changes

Mikaela: Steve has a couple of guesses as to why he has the only pharmacy that fills these prescriptions. For one, you have to be what’s called a compounding pharmacy to prepare these medications. Pharmacists there have special expertise to mix ingredients to make customized medications. Big national chains like CVS and Walgreens don’t run compounding pharmacies here in Vermont.

Then, there’s the threat of legal action. Act 39 has always extended legal immunity to prescribing doctors. But nurses and pharmacists weren’t sure they’d get those same protections if, for example, someone’s family member sued them. Then, last year, legislators passed an update to the law making it clear that all licensed health care workers involved in the process, including pharmacists, would be granted immunity. The update also allows patients to request the medication in a telehealth appointment instead of in person.

So far, that update hasn’t led to more compounding pharmacies in Vermont – they’re still a complicated type of business to run.

There are also some other changes underfoot. Remember that residency requirement? There’s a push to loosen it.

Betsy Walkerman: I just want to make sure you’re aware there’s a lawsuit that is pending, that challenges the requirement in Act 39 that the patient be a Vermont resident.

Mikaela: Betsy Walkerman runs Patient Choices Vermont, the main advocacy organization for Act 39. I had heard of this lawsuit before – the patient at the center of it, and her doctor, came on the show I co-host, Vermont Edition, a couple months back. The patient lives in Connecticut and has terminal cancer. She wants to come to Vermont to use Act 39.

Vermont Edition show from September, 2022 Patient: I’d like to choose how my final days are going to look, and that’s why I am seeking out a change in Vermont’s residency requirement.

Mikaela: Patient Choices Vermont isn’t involved directly in this lawsuit. But Betsy Walkerman is watching it closely. Medical aid in dying is one of the only medical procedures that’s restricted based on what state you live in. The other big one: Abortion. The main difference there is that you don’t have to be a legal resident of a state to travel there to get an abortion.

Betsy: Personally for me, the important thing is the broader implication of bodily autonomy and people being able to decide about their own medical care. 

Mikaela: And Vermont isn’t the only state taking a close look at how its medical aid in dying law works. After a similar lawsuit last year, Oregon is no longer enforcing its residency requirement.

Betsy: So right now, we're just watching the lawsuit, and interested to see whether Vermont can take the same step. 

Mikaela: Betsy tells me, medical aid in dying laws look different in other states and countries. In Canada, for example, it’s legal nationwide. Around 10,000 people used it there in 2021. And in Canada, you can qualify even if you have more than six months to live. People with certain chronic or longer term illnesses like Alzheimer’s are eligible. Some Vermonters with Alzheimer’s think they should have access to medical aid in dying, too. It’s a topic of debate, both in Canada and the U.S.

Josh Crane: When we come back, the second half of Charlie’s winning question: How does the medical establishment feel about all of this? That’s coming up next.

Physicians

Mikaela: Medical aid-in-dying was a controversial idea when it was first introduced in Vermont. For the most part the debate’s quieted down since it became legal. In part that’s because there really haven’t been any instances of the law being abused, that we know about.

But it’s still a topic that doctors have mixed feelings about. To learn more, I head over to Dr. Zail Berry’s house. She’s a retired physician living in Burlington.

Dr. Berry: Hello hi! Very cool to meet you! 

Mikaela: You as well! 

Mikaela: Dr. Berry specializes in end-of-life care. She worked with AIDS patients in San Francisco in the 80s, then moved to Washington, D.C., in the 90s before eventually moving to Vermont. In D.C., there was a lot of open debate about what was then called euthanasia, spurred by the case of Dr. Jack Kevorkian. He was a doctor in Michigan who was said to have assisted more than 130 people in ending their lives.

INSIDE EDITION:  “…he was a hero to some, but to many he was the death-obsessed doctor who helped patients end their lives instead of helping them to live…”

Dr. Berry:  People were really divided, there were people who were really for this and really against this. 

Mikaela: A newspaper reporter asked Dr. Berry for her thoughts.

Dr. Berry: I said to the person who was interviewing me, it takes a lot of skill to manage the patients that manage the symptoms of somebody at the end of life. And it takes no skill to write a prescription for Seconal, which was a barbiturate. And, and I was really worried that, that's what would happen is people would see something, oh, my gosh, you're suffering here, here. Here's a ‘script. So I was really, you know, worried about that.

Mikaela: Doctors weren’t being trained well to manage pain. That’s what she wanted the focus of end-of-life care to be.

Dr. Berry: My fear was that doctors who didn't know any better, would prescribe lethal medication, instead of getting people the help they needed.

Mikaela: Then, Dr. Berry starts telling me about some of the patients she was working with at the time. The one she remembers most vividly, the one at the center of her story, is Ginger.

Dr. Berry: She was 38 years-old and diagnosed with a rare form of stomach cancer that usually affects, you know, old men in their 70s who drank and smoked too much.  And it was just bizarre that this healthy 38 year old woman had been diagnosed with that disease, and I helped break that news to her family. I was rotating through the cancer clinic, and so I did that and then she started her chemotherapy. 

Mikaela: Dr. Berry didn’t hear from Ginger for a while. Then, she got a call. The chemo wasn’t working, so Ginger decided to stop treatment. She asked, “Dr. Berry, could you be my doctor for my end-of-life care?”

Dr. Berry: And I said, what happened to your oncologist? And she said, oh he told me to come back when I wanted more chemo. I mean, this woman with this life-threatening disease had been abandoned by her physician, and it was just appalling to me. So I said, of course I’ll be your doctor. I felt like this woman took me by the hand and showed me how to do what she needed me to do. And it was incredible. I remember the day she came to me with paperwork, and she said, um, I'd like to sign up with hospice, would you sign the paperwork for that? 

Mikaela: Ginger got into hospice, and soon after that she died from her cancer. She didn’t use medical aid in dying — remember this was the '90s, it wasn’t legal. But the experience of treating Ginger and listening closely to her needs…that changed Dr. Berry.

Dr. Berry: You know, when I teach, I tell stories, and I tell patient stories. And I almost feel like these people sort of live in me, like Ginger. I mean, I feel so much love for her, you know, in terms of, I feel like she gave me the career that I have. 

Mikaela: Dr. Berry went on to work for the University of Vermont, as a palliative care doctor and an educator. She also became a staunch supporter of medical aid in dying when it became legal in Vermont, as long as she was sure her patients weren’t asking for it because their pain was being ignored.

Mikaela: Do you remember the first time that a patient came to you and asked for a prescription or asked for information about it? 

Dr. Berry: Well, you know, I literally have had hundreds of people ask me to kill them. I'm not kidding you. I mean, a lot. And I say, well gosh, you know, you seem to be in a lot of pain, how about if we get your pain under control and we talk about it then? And I go back the next day, and they’re comfortable, and yesterday I say you were interested in ending your life? And they say no no no, I’m fine.

Mikaela: If they still really want to move forward and learn about their options, Dr. Berry says yes, she’ll help. She’s prescribed the medication many, many times. And whenever she had a patient who passed away in the way they wanted, Dr. Berry would think about Ginger.

Dr. Berry: I'm in my 60s, and certainly people who are trained up to the time I was trained, you know, death was failure. After Ginger died, I talked to my friend, uh, and I said, you know, Ginger died last night. And I, I know, I should feel bad because she died. And of course, I feel bad, but, but I feel really good about what I was able to do for her. You know, feeling good when somebody died was, that was totally anathema to medical training. I hope, and I think people trained more recently, did not get the message that death is failure, death is a part of life. And, you know, we want to make it as good as it can be for people.

Hospice

Mikaela: One of the things Dr. Berry tries to do, now that she’s retired, is to talk to other doctors about being prescribers for Act 39. But that’s a complicated choice for a lot of physicians, even if they support the concept.

This conversation happens a lot in the world of hospice care. Hospice, if you’re not familiar, is a special kind of care for people with incurable illnesses. Doctors and nurses who work in hospice help dying patients live as fully and comfortably as possible. There are hospice centers, but patients can also receive hospice care at home — that’s what Stanley and Elanie Fitch did.

The hospice workers I spoke to were all deeply passionate about their work and their patients. But, they said, there’s this stigma about hospice they’re constantly coming up against.

Dr. Nancy Long: People have been sort of confused about the role of hospice care in hastening or not hastening a person's death for a long time.

Mikaela: Dr. Nancy Long is the medical director of the University of Vermont health network’s home health and hospice. She says, there’s this fear out there, that going on hospice is somehow going to make you die faster. That’s why she chooses not to prescribe for medical aid in dying.

Dr. Long: I'm not in the role of a prescriber. You know, as somebody who's practiced in hospice care for over 20 years and watched the evolution of this across the country, and sort of had to correct the misunderstanding so many times in my life of what we actually do, and that our intent is never to hasten someone's death, I like there to be a clear line about what my role is. 

Mikaela: The University of Vermont doesn’t allow its doctors to prescribe for medical aid in dying if they know the patient is going to use it at a UVM facility, like the hospice center in Colchester where Dr. Long works.

Dr. Long: The the way I would describe the role of UVM home health and hospice is that we're engaged, neutral, we're neutral, but we're engaged. In other words, we will help a person help connect a person with the resources they need to do it as, as I said, we care for people, regardless of what their choices are around this.

Mikaela: Our question-asker, Charlie, wanted to know how the medical establishment feels about Vermont’s medical aid in dying law. It seems like the answer to that question is still actively evolving. Just ask Dr. Tim Lahey, who heads up UVM medical center’s clinical ethics program.

Tim Lahey: I’ve absolutely seen that evolution. We might’ve simplistically focused on prevention of death as an example of the indisputable goal, whereas I think it’s much more prevalent now for physicians to want to know what the patient’s goals are. If the patient, for instance, wants quality of life over quantity of life, we view that as our duty and privilege to be able to help them achieve those goals. And I do think that has been a cultural shift over the, over the years. 

A family affair

Mikaela: It’s not just doctors and nurses who are reevaluating how they approach the idea of death. Act 39 has spurred people across the state to talk more openly about death and dying, regardless of whether they support the law or not.

People like the Fitch sisters, who helped their parents navigate medical aid in dying, well, they’re the role models for that conversation. The sisters told me, supporting both their parents through the process of dying was incredibly hard — they basically put their lives on hold for months. But they got through it because they knew they were doing what their parents wanted. And they had each other.

Fitch sisters: And then, we were holding their hands when they drifted off.  And it was very peaceful. It was like falling asleep was very, very graceful. We read some poems to them, we sang to them. 

And then after their death, the community completely wrapped their arms around us. We had an open house, at their farmhouse, and we had my mother's paintings up, we had poems my father had written. My mother’s wall of wisdom, my mother's wall of wisdom. Oh, she'd write these little sayings down on pieces of paper and I started pasting them up on the wall and there's a lot of them. Some are like quotes from literature like Dostoyevsky or a poem that you like, but some are some that she wrote herself. Some were about weight loss.

And my son is having a Christmas party this weekend. And he's inviting his generation and our generation. And my parents will be on the mantel. And they would just love knowing that there's a party there. It continues. It continues.

I'd like to read something that one of our hospice nurses sent to us. You don't have to include it but it's um, she says: “Thank you so much for your note, I learned so much from you, from your parents, and you all, thank you for all of the reminders you allowed us to see of the power of love, family devotion and loyalty.”

I don’t know what happens to people after they die, but I do know that Elaine and Stanley’s memory lives on – in their family, their community in Calais, and, now, in all us. The memory is of how they lived and how they died, together.

Credits

Josh Crane: Thanks so much for listening to the show. And thanks to Charlie Bestard for the great question.

To see photos of the Fitch sisters, and their parents, Stanley and Elaine, check out our website, bravelittlestate.org. While you’re there you can submit your own question about Vermont, sign up for the BLS newsletter, and check out our episode archive. Find us on Instagram and Reddit at @bravestatevt.

Mikaela Lefrak reported this episode. I produced it and did the mix and sound design. Editing and additional help from the rest of the BLS team: Angela Evancie, Myra Flynn and Mae Nagusky. Ty Gibbons composed our theme music; other music by Blue Dot Sessions.

Special thanks to Jaina Clough, Erica Heilman, Tim Lahey, Lynda Bluestein, and Chelsea Chalfant.

Brave Little State is a production of Vermont Public. We have support from our station’s sustaining members. If you liked what you heard today, head to bravelittlestate.org/donate — or just tell your friends to listen.

I’m Josh Crane. We’ll be back soon with more people-powered Vermont journalism. Until then.