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Shared State is a podcast about our current political moment and the complex people and beliefs that shape Montana. Listen here or wherever you get your podcasts, and catch Season 2 on Yellowstone Public Radio Tuesday nights at 6:30 beginning March 15.

Season 2, Ep. 8: The politics of death and dying

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In 2009, Montana was caught up in a heated national debate over whether terminally ill patients could expedite their deaths by taking lethal, physician-prescribed medication. More than a decade later, the state is still mired in disagreement about medical aid in dying, in part because courts and elected lawmakers have sidestepped the political hot-potato. Meanwhile, individual Montanans are confronting profound and personal questions about death in their own ways — including whether “good” deaths are even possible.

Read former Montana Supreme Court Justice Jim Nelson’s reflection on the Baxter decision here.

Watch one of the Montana Legislature’s 2021 hearings on a bill to prohibit medical aid in dying here.

Transcript

Nick Mott A quick warning before we start this episode includes descriptions of death and dying, including mentions of suicide that may be upsetting to some listeners.

Welcome to Shared State. I'm Nick Mott. This is our last episode for the season. We've been digging into stories about political divisions and how people are working through them. In this episode, we're going to focus on a topic that many people don't like to talk about or even think much about. It's something that brings up a lot of strong feelings. This story is about death and specifically this choice that some people can make at the end of their lives when they're really sick. It has a lot of different names physician assisted suicide, death with dignity, medical aid and dying. And in Montana, it's playing out in a particularly strange way.

Mara Silvers Basically, over the last decade or so, Montana has kind of created this special mess around medical aid in dying.

Nick Mott Host Mara Silvers reported this episode.

Mara Silvers This issue is like a window into how we think about death and how our fear of dying can have pretty huge implications.

Nick Mott In this episode, how this debate about how we die has become an emotional sticking point in Montana's politics.

Where's the story for you?

Mara Silvers This story came to us from a person named Lindsay Barnes. She's a resident of Helena Montana, a longtime community member, also a friend of mine and the owner of this epic coffee shop called the General Mercantile.

And one of the reasons why I wanted to talk to her for this episode is because she is very comfortable talking about uncomfortable topics, including death. She's actually so comfortable with death that recently she's been training to become a death doula.

Nick Mott So when I think about a doula, I think about, you know, childbirth and beginning of life what's a death doula?

Mara Silvers I mean, it's basically a kind of assistant or an emotional, spiritual kind of logistical guide for helping people prepare for death.

Nick Mott So what made her want to take those steps to become a death doula?

Mara Silvers So in the last couple of years, Lindsey has had two people who are very close to her die after they had been diagnosed with terminal illnesses. And both of these deaths, Lindsey was pretty involved with.

Mara Silvers I was wondering if you could tell me about the first person who you helped die?

Lindsay Barnes Yeah.

Mara Silvers Who was she?

Lindsay Barnes That was Darlene.

Mara Silvers Lindsey moved to Helena in 2001, and she was a college student, and she started going to the General Mercantile all the time, the coffee shop that she now owns. And after a couple of years, she just decided to start working there.

Lindsay Barnes You end up instantly being drawn to the permanent regulars, and two of those people were Rog and Dar, who kind of then took me under their wing and became my pseudo like Helena parents. So she was a like mother role model figure for me and a friend for 20 years.

Mara Silvers By all accounts, Darlene was this incredibly compassionate, warm person. She was a great listener. She loved to give people big hugs. And about 15 years into knowing Lindsey, she was diagnosed with a type of tumor called a glioblastoma. It's a very aggressive form of tumor that usually happens in your spine or in your brain.

Lindsay Barnes They always have these little like tentacles that just latch on and you can't get them all. So it's inevitable that you will die of a glioma. It will come back and you will die of that in the end.

Mara Silvers So because of that, Lindsey said that everybody who was part of Dar's care team knew that she was going to die probably sooner rather than later. But Lindsey says they weren't really talking about death.

Lindsay Barnes I think as you're still receiving treatments, you know you're on a chemo plan, you're on a radiation plan and you're seeing a doctor. There's just an element of feeling like it's going to keep working. And so by the time it doesn't work, the time is really narrow. Her glioma came back, you know, two and a half years later, the nurse came to the house to inform us that the treatment wasn't going to work anymore.

Mara Silvers Lindsay says that that's when the people who are taking care of Dar started getting ready for Dar to die at home, which is where she was comfortable. About four days before Dar died, she slipped into a coma and on January 27th, 2019, she passed away. Lindsay says that there were many beautiful moments in the days and weeks before Dar died, but one thing that she's still been turning over in her mind is this question of whether or not Dar died the way that she wanted to, because one of the things that they never were able to talk about was the possibility of using medical aid in dying.

Nick Mott So what exactly is medical aid in dying?

Mara Silvers Medical aid in dying is for a very specific type of patient. So these patients have to be adults. They have to be of sound mind, which means there's no question about their ability to make this decision and they have to be terminally ill. So a patient like this will ask for a prescription of drugs, and usually it's a combination of barbiturates or sleep meds and medications that stop their heart. If a doctor decides that a patient meets all of those criteria, the doctor can prescribe that medication to a patient. After that, and this is kind of a critical part, the patient is able to self-administer that medication at any point they choose.

Nick Mott So you mean the patient give themselves that medicine. It's not like the doctors doing that for them.

Mara Silvers Exactly. Yeah. By self-administer, I mean, like drinking the medication in a cup mixed with other liquid.

Nick Mott Why didn't you get these drugs?

Mara Silvers Lindsay says that in a nutshell, they didn't think that it was an option in Montana. It wasn't talked about at all, even though Lindsay says she thinks Dar would have been a good candidate for aid in dying. The weird thing is, technically aid in dying was available in Montana at the time the Dar was getting ready to die and it had been since 2009.

Nick Mott So if medical aid in dying has been available in Montana for a decade, why wasn't that information available to her? Like, why weren't they hearing about this in any of those conversations?

Mara Silvers So it's actually not uncommon for there to be miscommunication or a lack of communication about medical choices at the end of somebody's life. And that applies just about anywhere in the country. And to explain that, I called up Dr. Amber Comer. She's an associate professor of health sciences at Indiana University.

Amber Comer I do research in medical decision-making for patients who are facing life threatening illness.

Mara Silvers Dr. Comas says that even one patient can have several different avenues for their medical care at the end of life.

Amber Comer Just that one patient, for instance, making that one choice sort of starts into a spider web and leads into all these different options and choices in how the patient can die.

Mara Silvers She gave me this one statistic that I've been thinking about ever since. She said that 60 percent of people will die in a hospital, even though 80 percent of people would prefer to die at home. And that disconnect is about a communication problem.

Amber Comer I think what fails to make headlines is the number of patients who die every single day in the hospital in a way that they may not have wanted to die because nobody wanted to talk about how that patient was going to die. It's a very scary prospect to actually think about your own mortality and what you want your death to look like. So I understand why people don't want to talk about it.

Mara Silvers Dr. Comer says that this isn't a new problem, and it's also not going to go away anytime soon. But Dr. Comer says that about 20 years ago, that whole spectrum of medical choices. This whole conversation got even messier, and that was because of a political fight shaking out in Oregon.

[Archive Tape From TV News Anchor] Oregon voters refused to revoke the right to die law by a resounding 60 to 40 percent margin and seemed to open the way for assisted suicide. But the federal government then stepped in.

Mara Silvers You can imagine Oregon as kind of the domino that started tipping everything else. Other states started debating this topic, and eventually that debate came to Montana, not in the form of legislation or a ballot referendum, but actually in the form of a court case. Let's roll it back to 2007. Here was a man who had there was a man named Bob Baxter from Billings, a retired long distance truck driver

[Archive Tape From Courtroom] Was confronted by a dying process that was agonizing.

Mara Silvers Who is diagnosed with a form of leukemia? He knew eventually he was going to die and he wanted aid in dying. The problem was that he had no idea whether or not it was legal. I'm going to bring in Anthony Johnstone, a constitutional law professor at the University of Montana's School of Law. And also fun fact, he happens to be one of the attorneys who argued against Baxter in this case when he worked for the Attorney General's Office. He even has this picture of him before the court, arguing this exact case. So anyway, Anthony says this case was an attempt to solve an unanswered question.

Anthony Johnstone There really wasn't any evidence in Montana that either the Legislature or the executive ranch or local prosecutors were out to enforce the homicide laws against physicians who might have been providing physician aid in dying. It was just unknown.

Mara Silvers The district court judge ended up siding with Baxter, saying that the state Constitution protected this medical procedure, but the case does not stop there. The state attorneys ended up appealing the ruling to the Montana Supreme Court.

Nick Mott So the case goes up to the Supreme Court. What did they decide?

Mara Silvers Well, they didn't exactly reverse the district court's decision, and they didn't exactly agree with it. They ended up doing something else entirely. They said they wanted to look at what the Legislature had already said about the rights of terminally ill patients. There's a whole part of Montana state law called The Rights of the Terminally Ill Act. So what the Supreme Court decided to do was zoom in on one part of that law to talk about something called "the consent defense."

Nick Mott And what is "the consent defense"?

Mara Silvers In Montana, terminally ill patients have the right to stop medical treatment at any point, and they can do that even if stopping that medical treatment will result in their death. The reason why they're able to do that is because the patient's consent ends up being a type of protection for the physician. So the court said that a patient who asks for aid in dying, who consents to aid in dying. In doing so, they would give legal protection to the physician.

Nick Mott So this all comes back to if the patient is able to say, "yes, I want this" to their own physician or doctor.

Mara Silvers Right. So the court decided that this consent defense could be applied to aid in dying. And Anthony says that that decision, the Baxter decision, ended up changing the whole landscape in Montana.

Anthony Johnstone Whereas before Baxter, the starting point was that any physician providing physician aid in dying was at risk of prosecution for homicide. After Baxter, the inertia shifted the starting point, then was a presumption that physician aid in dying was authorized.

Nick Mott So to this change the whole way,medical aid in dying was viewed in Montana, but it doesn't really seem like it resolved the whole question still, right?

Mara Silvers Right. I mean, when you look up states with medical aid in dying, Montana has like this kind of asterisk next to it. All of the other states that have aid in dying passed it through a ballot referendum or through an actual law. And all we have is the Baxter decision, which lays out a technical pathway for aid in dying to be available in Montana. But it is a very narrow and kind of unstable pathway.

Nick Mott It seemed like there's a huge amount of risk on the medical provider side. Is there any evidence that this is actually happening in Montana?

Mara Silvers It's not like there's a public list that's in circulation of all of the doctors in Montana who are OK with prescribing aid in dying. Those providers are very hard to find. But that doesn't mean that it's not happening at all.

Mara Silvers One of these people is Dr. Eric Kress. He's retired now and spends a lot of time with his dogs. But he came to Montana in the late 80s as a primary care provider, and a couple of years after that, the Baxter decision came down.

Eric Kress I think those of us practicing were very much sort of, well, what does this mean?

Mara Silvers So this is around 2010, and at that time, Eric gets a new patient. Eric describes him as this kind of stubborn guy, a retired orthodontist, and he had end stage ALS or Lou Gehrig's Disease. Eventually, he started pushing for aid in dying like, OK, the Baxter decision is here.

Eric Kress "You can do it and not endanger yourself. You know, why won't you do it?" He said all those things in much more strident fashion. He was cursing me out. He was calling me a coward.

Mara Silvers And Eric says, Look, you know, this just came out. I haven't really investigated it.

Eric Kress I haven't had time to talk to other people about it.

Mara Silvers Eric basically said, "no", it was too soon. He needed to take time to understand the case more. In the meantime, this patient of Eric's died. And even though he doesn't know for sure, he has this suspicion that he died from an intentional drug overdose. And the whole experience really impacted Eric.

Eric Kress He never missed an opportunity to call me a coward and to deride me for my lack of courage to help him out.

Mara Silvers How did you respond to that?

Eric Kress Well, you know, I laid awake at night thinking about, you know, what kind of physician am I? Am I going to basically succumb to fear for myself? Or am I going to step forward and do something that's legal and that would clearly benefit the patient and and palliate the symptoms of their terminal illness in the best way possible?

Mara Silvers A couple of months later, Eric gets another patient who was diagnosed with esophageal cancer. He also wanted aid in dying. And after many months, Eric decided that he met the qualifications. He was an adult who was terminally ill and who was of sound mind to make that decision for himself. So Eric prescribed the medication, and eventually the man decided to take it.

Eric Kress He was sleeping soundly in five minutes and in 10 minutes he wasn't breathing, and in 15 minutes, you know, he had no pulse. He passed away very, very quickly, and everybody who was there just felt how sort of calm and peaceful this death was.

Mara Silvers Eric said he ended up seeking medical aid and dying as an important option for some patients. He developed his own consent sheet to make sure he was legally protected as a doctor. And over the course of his career, he said he prescribed aid in dying for probably about 100 people. Maybe half of those people actually ended up taking the medication. He also said there were a lot of people who came to him who asked for this medication, and he didn't end up prescribing it at all. When all is said and done and he looks back,

Eric Kress [00:17:17]I did a lot of great things in my lifetime, you know, I delivered thousand or more babies and I saved numerous people from illnesses and I had a great career and it was very rewarding. But when all is said and done, the most noble thing I did is advocate for medical aid in dying and prescribe medical aid in dying. [23.4s]

Nick Mott So to Eric, what's keeping medical providers from actually prescribing aid in dying? Is it fear,

Mara Silvers You know, to Eric, that's definitely a part of it. But there's also just this intense philosophical disagreement from a lot of medical professionals. The American Medical Association has not come out in support of aid in dying. They see it as being fundamentally incompatible with the physician's role as a healer. So essentially, individual doctors end up being a type of gateway for talking about aid in dying and considering it as an option for their patients, or they can be a type of wall.

Nick Mott We'll be back to Shared State after this short break.

Nick Mott Welcome back to Shared State host and reporter Mara Silvers is taking us through Montana's history with physician aid in dying. Where we left off was after the Baxter decision, when some doctors were just starting to get used to this idea that they could prescribe lethal medication to some terminal patients. But pretty soon after the court's ruling, those physicians and patients started running into strong political pushback

Mara Silvers After the Baxter decision came down in 2009. This whole debate ended up coming to the state Legislature.

Mara Silvers Starting in 2011. Legislators brought forward these bills to debate whether or not physician aid in dying should be explicitly illegal.

Nick Mott So what were the arguments being made about these bills?

Mara Silvers There are so many. A really prominent argument coming from mostly Republican lawmakers is that this seems like a fallible process of deciding who is competent to make a decision about medical aid in dying.

[Archive Tape From Hearing Room] And my real fear in this is that those people who are in that compromised state will be taken advantage of.

Mara Silvers Mostly, though, I would say that the driving disagreement here is a philosophical one. What so many of these legislators say is that it's not actually up to us when we die.

[Archive Tape From Hearing Room] God determines the number of days.

Mara Silvers For some lawmakers, there's the strong religious belief that it's up to God to decide when we come into this life and when we leave.

[Archive Tape From Hearing Room] We should not be the ones that are that are playing God.

Mara Silvers For other people who oppose aid in dying. There's this broader concern of what does it mean for our whole society if we stop fighting death? In some instances.

[Archive Tape From Hearing Room] We did not ask to come into the world. We should not ask to leave the world.

Mara Silvers So much of that conversation about needing to fight death and sustain life has a lot of overlap with an issue in Montana that's very real and very personal, which is the topic of suicide. This is something that we hear a lot from Senator Carl Glimm. He's a two time sponsor of this legislation to make aid and dying explicitly illegal.

Mara Silvers He says that there's a very slippery slope between medical aid in dying and suicide.

[Archive Tape From Hearing Room] Carl Glimm Say a youth is thinking about suicide and to tell them that their pain is not real enough that what they're feeling in their heart and in their mind is not as severe as what somebody faces at the end of their life.

Mara Silvers I should just say that advocates for physician aid in dying really, really take issue with this idea, this conflation between medical aid in dying and suicide. They say that that's not an accurate comparison at all because aid in dying is only available when death is imminent, unavoidable and unpreventable. Still, it's an idea that comes up constantly in debates in the state Legislature. In the last legislative session in 2021, it was also an idea that we heard from somebody very high up in the governor's office. Lieutenant Governor Kristen Juras.

Mara Silvers Juras made it very clear that she also sees physician aid in dying as suicide. During her testimony, Jerry said something that really caught me off guard. She said that she was taking off her government hat, so to speak, and testifying about her fear of suicide as a grandmother.

Kristen Juras I have two grandchildren who have a life shortening condition; cystic fibrosis. My youngest has had eight surgeries, and he's only four years old. We go through two to four hours of treatment every day and we value their lives and we are committed to walking with them through the hard days. [00:23:24]I do not want you to send them the message when they have a tough day, that suicide is an acceptable option. [9.3s] Please help me as a grandmother. Thank you.

Mara Silvers Even after Juras' testimony, the bill didn't pass. It ended up failing on a tie vote. I think it's notable that this is the sixth time that this bill or similar legislation has failed. And that's even though Republicans have been in control of the state Legislature in every session that these bills have come forward. So all of that to say that this is not a purely partisan issue. The subtext in so much of this testimony is this pervasive sense of fear. Fear of dying. Fear of suffering. Fear of people being taken advantage of when they're very vulnerable. There are so many unknowable parts that come with death.

Nick Mott That seems really relatable. I mean, death is the biggest unknown there is.

Mara Silvers Right? I mean, I think that that goes for people who themselves are dying or are terminally ill, whether or not they consider physician aid in dying. But it also goes for all of the people who are left behind. People like Lindsey Barnes from the very top of our episode.

Mara Silvers A few years after Lindsey said goodbye to Dar, her pseudo mom in Helena, Lindsay's sister Carly was diagnosed with leukemia. Carly lived in Oregon, and in 2021 her illness took a pretty bad turn. She was hospitalized for a couple of weeks, and Lindsey says when she came out, it was clear that Carly and their whole family had to start talking about the fact that it was very likely that Carly would die. Carly decided that she wanted to have access to medical aid in dying, just in case.

Lindsay Barnes She got out of the hospital, and it was like I was looking at an entirely different person. We had a different connection. I knew instantly right then that we were going to do this together.

Mara Silvers She asked Lindsay to come back to Oregon from Montana with the rest of their family and help her get ready for this process. It was a Saturday in the summertime, and Carly was at her house with the rest of their family and their support team. She ended up going out to the backyard and laying in this hammock surrounded by everybody. Carly had this this cup with the medication in it, and when the time finally came, it was Lindsay's job to hand her that cup. And as they're sitting there, Lindsay said that all of these emotions just started coming over her.

Mara Silvers Did she seem scared at all?

Lindsay Barnes No.

Mara Silvers Were you scared?

Lindsay Barnes Yes.

Mara Silvers Why?

Lindsay Barnes I was not scared for Carly to die. I was not scared to hand Carly that cup. I was scared about what people would think of me. I was worried that my moms would be mad. Yeah, but I wasn't worried about Carly.

Mara Silvers But the reaction to it, that's what you're worried about?

Lindsay Barnes Yeah, the reaction to the people around me and then also like a little bit of like, what will this do to me? Like, what do I become after this? Which ended up being fine.

Mara Silvers Carly's death was undeniably tragic for Lindsay and for the whole family. But Lindsay says it was also incredibly beautiful, and it helped her realize that a death like this was possible and that everybody ideally deserves a good death. Lindsay says after Carly's death, she doesn't believe that death has to involve suffering, regardless of whether somebody is using aid in dying or not, one of her goals now in working as a death doula is to help people process what they're feeling when they're approaching death, whatever it is, so that when that moment finally comes, they might actually be able to suffer less.

Lindsay Barnes In my first do, of course, a big phrase that stuck out to me is she just kept saying "our job is to get the clients to just that they can keep saying whatever happens is OK." Whatever happens is OK. Whatever happens is OK. And if you really do believe that, that means the deaths, OK. Everything just melts away and you literally are just in the moment of helping the person go home.

Mara Silvers From all of us on the Shared State team, thanks for listening.

Shared State is a podcast by Montana Free Press, Montana Public Radio and Yellowstone Public Radio. This episode was reported by Mara Silvers and edited by me Nick Mott and Nicky Ouellet, who also produced this episode. Editorial Assistance by Corin Cates-Carney Nadya Faulx and Brad Tyer. Fact checking by Jess Sheldahl and Gabe Sweeney is our sound designer.