- [Narrator] Production and distribution of City Club Forums on Idea Stream Public Media are made possible by PNC and the United Black Fund of Greater Cleveland Incorporated.

(energetic music) (bell dings) - Hello and welcome to the City Club of Cleveland, where we are devoted to conversations of consequence that help democracy thrive.

It's Friday, June 2nd, and I'm Cynthia Connolly, director of programming here.

I am pleased to introduce our speaker today, Anita Hannig, anthropologist and author of, "The Day I Die, the Untold Story of Assisted Dying in America".

Today's topic is a heavy one.

Assisted dying is a topic that is often discussed only when you or a loved one comes face to face with the reality that you have limited time left.

In 2014, Brittany Maynard, a terminally ill cancer patient who lived in Oregon made national news when she decided she would end her own life.

It reignited the conversation on what assisted dying is and is not.

Today in the United States, 22% of Americans live in places that now authorize medical aid in dying, but as more states consider and pass legislation that supports the practice, confusion and hurdles remain.

In 2015, Anita Hannig began researching medical aid in dying in the United States.

She spent hundreds of hours speaking with doctors, patients, and lawmakers across the country.

The results of Hannig's long-term project are laid out in her latest book and combines extensive research with personal narratives.

Hannig goes beyond the surface level polarization to offer a deeper, more nuanced assessment of a social issue that will continue to affect many more Americans.

Today we will first hear some opening remarks from Anita and then move to a conversation on stage moderated by Lisa Vigil Schattinger, executive Director of Ohio End of Life Options.

If you have a question for our speaker, you can text it to 330-541-5794.

That's 330-541-5794.

And you can also tweet your question at @thecityclub and City Club staff will do our best to work it into the second half of the program.

Members and Friends of the City Club of Cleveland, please join me in welcoming Anita Hannig.

(audience applauding) - Thank you so much for joining us on this perfectly lovely Friday afternoon to talk about death.

Thank you to the City Club for hosting the event and to Ohio End of Life Options for being our community partner.

It is incredible to be here, first time in Cleveland.

Before the food coma hits you too bad I am going to jump right in.

For much of American history, the idea of choosing the terms of your own death would've been unthinkable and is perhaps still unthinkable for some.

Today in a culture where death has been rendered mostly invisible, tacked away in nursing homes, hospitals, and mortuaries, selecting the day you die and inviting people to your death might seem frivolous.

Yet at the end of a long line of failed treatment options, patients whose physicians have designated them as terminal must forge their own path forward.

In a growing number of states today, that path includes the option of having a medically assisted death, but it's a path we're only just beginning to examine and understand.

My work is about that path.

What stands in its way medically, legally, culturally, emotionally, and why people pursue it anyway.

Medical aid in dying offers a legal way for a terminally ill, mentally competent adult patient to end their life by ingesting a lethal medication prescribed by their physician.

For over a decade, from 1997 to 2008, Oregon was the only state that permitted assisted dying.

Since then, nine other states and Washington, DC have legalized the practice.

As of today, one in five Americans lives in a state with legal access to an assisted death.

But the battlefronts are no longer confined to traditionally blue states either.

Americans everywhere are increasingly drawn to having a say in how they die.

According to a 2020 Gallup poll, seven in 10 Americans think that physicians should be able to help terminally ill patients die, and not just Americans.

Across the globe, more countries have moved towards legalizing assisted dying now than at any other time in history.

Even in predominantly Catholic countries like Spain and Portugal public acceptance of assisted dying is on the rise.

If the right to die was relevant before, it is even more relevant today.

To capture the full scope of this issue, I spent five years shadowing those on the front lines of assisted dying in America.

I wanted to know how access to an assisted death was transforming the ways Americans die.

My research took me into the intimate spaces of American living rooms and hospital suites.

I traveled to courtrooms, public hearings, and state archives across the country, focused mainly on the Pacific Northwest where assisted dying has been legal the longest.

For eight months, I worked as a hospice volunteer and accompanied patients during the final weeks of their lives.

My training as a cultural anthropologist had everything to do with how that research unfolded.

I deeply immersed myself in the communities I studied.

It became clear quickly that I wouldn't be able to study death the same way I had studied other academic topics.

My research consumed me and it touched me on a profound emotional level.

There were times when I would ride my bike home after an interview with a dying patient and be convinced that everyone I passed on the street was riddled with cancer.

As a society, we do so much to uphold the boundary between life and death, and my work was making that line appear unnervingly thin.

But what surprised me was that the world of assisted dying was neither as sad nor as somber as I had feared.

Some of the deaths I attended were so uplifting and beautiful they made me forget that I was witnessing a death at all, because how the people I met chose to die had everything to do with how they had lived.

Assisted dying reframes how we understand the potential of medicine, not as a way to extend life, but to ease the process of dying.

And assisted death is much larger than swallowing a lethal dose of medication.

It changes how we live, how we die, and how we envision our future.

Today I want to take you into the world of one patient.

I came to know during my research in Oregon.

His name was Ken.

The morning of Ken's death, I stood in front of my closet trying to figure out what to wear.

I knew Ken didn't want his death to be a somber affair.

He was ready, giddy even.

The drab librarian dress was definitely out.

Jeans on the other hand seemed a little too casual.

I wanted to look nice and give Ken's death the gravity it deserved, while also honoring his wish to celebrate.

As I thumbed through my hangers, I couldn't help but feel the dissonance of choosing an outfit for someone's final hours.

Three years into my research on assisted dying, I still found myself in situations like this with no formal playbook.

But if I didn't decide promptly, I was going to be late.

Finally, I opted for a pair of striped summer slacks, a sleeveless navy blue satin blouse and leather sandals.

Then I grabbed my notebook and ran out the door.

30 blocks to the east at the foot of one of Portland's iconic city parks, Ken was also getting ready.

Though he had spent much of his life flouting propriety, he had decided to dress up for his death.

In the quiet light of the morning, he trimmed his white Van Dyke beard, slipped into a clean pair of khakis, buttoned his olive colored dress shirt, and threw on a charcoal vest.

He dug out his red bandana and tied it in a neat triangle knot around his neck.

Then he traded his tired plaid house slippers for a pair of elegant pointy leather shoes.

Ken's breakfast that day was simple, a single hard boiled egg and a cup of black coffee laced with Fireball whiskey.

Not that it was his habit to drink alcohol with breakfast.

It didn't mix well with his heart medications.

But today, Ken felt festive.

He had waited for this day for months.

At 10:30 AM I met Ken's prescribing physician, Neil Martin, in the foyer of Ken's retirement facility.

Save for his medical bag, which could have passed for a plump briefcase, you wouldn't have guessed Martin was a doctor.

He wore a cornflower blue dress shirt, black Levis and hiking sneakers.

Martin had begun working with terminally ill patients interested in using Oregon's Death with Dignity law in 2009.

After his retirement from family medicine in 2015, he had kept his license so he could continue to volunteer as a physician.

Martin and I signed the facility's guest log and made our way to Ken's apartment in the far corner of the building.

At the entrance to the dining hall, next to a roster of activity charts announcing bingo night and water aerobics, a cluster of walkers sat parked, waiting for their owners to return.

We swung a left down a white hallway lined with rustic watercolor paintings, all depicting stone bridges reaching across gurgling creeks.

The pictures conjured a pleasant but generic nostalgia.

Ken couldn't stand them.

When we entered his apartment everyone else was already there.

Ken and his two sons, Tony and Zach, Ken's granddaughter who had flown in from California, and Sophie, his beloved caregiver.

Standing and chatting among the family was Dariana Mooney, a volunteer for End of Life Choices Oregon, a nonprofit that accompanies patients and families on their path to an assisted death.

Dariana was here to ensure that everything went smoothly and that Ken felt supported in his wish to die.

The apartment looked exactly like it had the last time I was here, stuffed with furniture, unwieldy plants, Ken's hand drawn paintings and stacks of loose paper.

Two golden helium balloons spelling 90 still clung, bloated, to the ceiling, like giant bubbles trapped under a bottle cap.

Ken had turned 90 exactly a week ago.

As I greeted his family, Martin, Dariana and Ken huddled to go over some last minute logistics.

Minutes later, Ken lowered his tall frame into his armchair.

His dog Fluffy, a white Shih Tzu jumped onto his lap.

Smiling broadly, Ken folded his veiny hands around her.

He locked eyes with Martin who nodded and stepped closer, kneeling in front of Ken so they could be at eye level.

Martin held a bottle of Seconal, a powerful barbiturate, between his thumb and index finger.

It had Ken's first and last name written on the label.

"Do you know what this medication will do to you, Ken?

", Martin asked.

The question was part of a protocol the doctor followed each time to ensure that a patient fully grasped what was about to happen.

Ken lifted his eyebrows and puckered out his lips.

He was gearing up for a joke.

At the last moment he thought better of it.

Ken sat up straight.

I will never wake up again.

"Do you still want to proceed?

", Martin needed to know.

Ken couldn't resist.

Well I wouldn't wanna chicken out now.

The party's already in full swing and all the guests are here.

Martin rested his mocha eyes on Ken, waiting patiently, studying his face.

There was a tenderness in the doctor's mannerisms that surprised me every time I saw him interact with a patient.

What I had initially mistaken as shy reserve was a deep and abiding empathy for human hardship.

I sometimes wondered if he had chosen medicine or if medicine had chosen him.

Martin told Ken that it wasn't too late for him to change his mind.

"They could call the whole thing off right now," Martin said evenly.

A sense of alarm flashed across Ken's face.

No, I want to go through with it, Ken said, holding the doctor's gaze.

He sounded more sincere now, more resolute.

The exchange reminded me of a similar conversation I had with Ken about a month ago.

I had asked him if he thought he might change his mind when it came closer to the end.

He had stared at me with a firmness I had never seen in him before.

No, not me.

If we're gonna rob a bank, we're gonna rob a bank, okay?

At the time, I broke into a grin and thought, I would rob a bank with you.

I like Ken.

Some people probably found his sense of humor grating, but to me, his candor felt refreshing.

Even at 90, Ken didn't let anyone put him over a barrel, but he also knew that not everyone shared his sense of relief that his life would soon be over.

I have to respect the kids too, you know, he said to me.

I don't want to try to make a happy occasion out of what they think is a sad occasion, but I think they're realistic about it.

Ken's sons knew about their father's daily physical struggles, how numbness crept up his arms, how fluid retention caused his limbs to inflate, how he had started urinated blood, how every time he exerted himself, he would experience a piercing pain in his chest.

How he could barely walk the 50 feet to the parking lot outside his back door without feeling like he was having a heart attack.

I'm getting worse every day, he had told me.

I don't want to have a stroke and have the boys take care of me.

I am more afraid of living than I am of dying.

At 90, Ken knew that his luck was running out.

He suffered from congestive heart failure, a leaky heart valve, and an aggressive form of prostate cancer.

Five months before I met Ken, his primary care physician had enrolled him in home hospice care.

In Ken's living room, Martin reached into a paper bag from the pharmacy to retrieve Ken's pre-medications, pills that would settle his stomach and prevent nausea and anxiety once he took the lethal dose of Seconal.

The pre-medications typically take an hour to go into effect.

In many ways, they start the clock on an assisted death, physically as much as logistically.

Martin unscrewed the two bottles and handed Ken one pill of Zofran and two pills of Reglan.

The clock read 10:50 AM.

Ken reclined in his arm chair, looking satisfied.

He and his family started reminiscing about his irreverent past, about the fortunes he made and lost in the San Francisco real estate business, his carwash business that prospered and tanked, the 32 cars he had owned in his life, his rambunctious early days as a blues musician, the house he had built with his own two hands.

His audience indulged him, reveling with Ken in the soft glow of a bygone era.

You had a darn good run, dad, said Zach.

You taught both of us to be hard workers.

Ken beamed.

He'd had a full life.

He had told me so many times himself.

Ever the gracious host, Ken kept offering his guests food and drinks when lulls threatened to puncture the conversation.

He had wanted to make sure there would be enough cheese and crackers at his gathering so guests could transition directly into the wake, a joke that cracked him up even as he was telling it.

Now he pulled out another.

When they put me into the body bag, make sure they leave a little space for my finger just in case I need to unzip it again.

Don't worry, dad, we'll put a bell in there for you, Zach said, and winked.

Ken, still raining in his armchair, fiddled with his iPhone and sent out a few messages.

I was struck by the finality and simultaneous banality of the moment.

Something as commonplace as typing up a text message takes on a much different meaning when you know it'll be your last contact with someone.

That was the thing about Ken's death.

It felt both momentous and strangely mundane.

Even in the midst of a death, people get hungry, use the bathroom, and scroll through their phones.

Yet everyone knows that something extraordinary is about to take place.

Ken put his phone down and looked at Martin.

It was 11:45 AM, almost time.

Ken announced that he was going for a leak, rose unsteadily to his feet and bumped his walker across the carpet.

A few minutes later, he emerged and shuffled into the bedroom.

He asked his granddaughter to join him so they could have a private moment together.

Minutes later, he called for the rest of us.

Seated on the edge of his bed, his feet touching the floor, Ken requested that his family flank him on either side.

Martin, Dariana, Sophie and I stood in a cluster near the doorway.

I rested my back against one of the bedroom walls, thankful for the extra support.

Tony queued up the song Ken had chosen to accompany his death, "Nothing About The Blues", written and performed by Ken himself with the help of his sons.

That record really signifies a lot of stages of my life, Ken had told me when he gave me a copy of the album a month prior.

It really shows you what kind of a life I lived, and it's nothing to be proud of, okay, but it was exciting.

At Ken's bidding, Dariana handed him the wine glass with a lethal medication.

It looked thick and milky, a dense paste pierced by a wide stocky straw to help transport it to the back of the mouth quickly, bypassing some of the taste receptors for bitterness.

But Ken didn't want to use a straw.

Dariana wasn't surprised.

In her experience a lot of men refused straws.

They found them degrading, unmanly somehow.

The moment he heard the first notes of his song blasting from the speakers, Ken lifted the drink to his lips and swallowed the contents.

The bitterness didn't faze him at all.

When he was done, Ariana offered him some Coke spiked with Fireball per his request.

Gulping it down, he wiped his lips with the back of his hand and handed the empty glass back to her.

I could feel the back of my throat constrict.

Ken had said he wanted to be gone by noon.

He looked at his watch.

It was 11:52 AM.

The music kept playing.

Don't care if I win or I lose, Ken crooned to the sound of his own voice, his live baritone only slightly overpowering the one booming from the record.

I don't know nothing about the blues.

And then it all happened very fast.

As Ken began reciting his epitaph, his words slurred and trailed off.

Walking on eggshells, hanging by a thread, not really living, not really dead.

I'm all used up, nothing left to give.

All my time is spent just trying to live.

That's why I've chosen not to be and let the world turn minus me.

Ken closed his eyes, his head dropping low on his chest and drifted off to sleep.

Tony and Zach removed his shoes and lifted his legs onto the bed so he could rest comfortably on his side.

His dog nestled in the nook between Ken's thighs and his belly.

Ken's sons formed a circle around his granddaughter and held each other, weeping.

I felt tears burning in my own eyes, but I didn't wanna cry in front of the family.

I was glad when Dariana motioned for me to join her and Sophie and Martin in the living room.

Hands in our pockets, we stood around chatting quietly, keeping an eye on the clock.

Now all there was to do was wait.

10 minutes later, Martin stepped back into the bedroom and Dariana and I followed.

Ken's skin had turned ashen already.

His jaw was slightly open.

The doctor bent over Ken's torso and listened for a heartbeat with a stethoscope.

He felt for Ken's pulse at his neck.

He put his hand on his chest.

Then he looked up at the bedroom clock, which read 12:08.

He's gone, said Martin, his voice on the edge of breaking.

Everyone filed out of the room except Fluffy, who remained pressed up against Ken's lifeless body.

After bidding Ken's family and Sophie goodbye, Martin, Dariana and I walked back to the front desk to sign out of the guest log.

This part never ceased to feel strange to me.

In the space between the two timestamps on the sign in sheet, a person had died.

The three of us stepped out into the warm midday sun.

We didn't talk much, but before we parted ways, Dariana shared her feelings about the death we had just witnessed.

Ken sung himself out, she said, and smiled.

Thank you.

(audience applauding) - I've heard her read that a few times now, and it gets me every time.

Thank you, Anita.

My name is Lisa Vigil Schattinger.

I'm the founder and executive director of Ohio End of Life Options.

I'm here because I'm originally from Oregon, and it just so happens that 10 days after Brittany Maynard used Oregon's Death with Dignity Act, my stepfather used Oregon's Death with Dignity Act.

He ingested the medication made available through that.

And my mother, who's in the audience with us now, and I were at his bedside.

And I have to take a moment to acknowledge this forum and opportunity to have a respectful conversation.

It's something that I think I can safely say Jack would've really relished.

He loved having great conversations.

So I remember that morning being in the hotel room.

I had traveled from Ohio to Oregon to be with them, and standing there and thinking, what does today bring?

I had been with people who had died.

I'm a nurse by training as well as personally.

And I had been afraid at times in the past.

But today I wasn't feeling afraid, I was just feeling like I didn't know what was going on.

But I was also feeling a sense of peace because I knew that Jack had a sense of peace.

He felt so empowered by this process, like Ken.

This was sort of an intrinsic part of his personality.

This is what he wanted to do.

When he got his diagnosis he was thankful to live in Oregon and have this ability.

And so he started researching the process and felt immediately a sense of comfort in having some sense of control in a time that's so chaotic.

And so his sense of peace helped me start that day.

- I mean, it's so interesting to think about the patients I met during this research all had come to this space of acceptance of the fact that their life was ending, and had made this peace that you were talking about.

They were no longer in denial about what was coming.

And in fact, many of them look to their own ending with a sense of completion.

And I think many of us associate this word terminal with the fact that something is ending.

But for many of the people that I worked with, including Ken, there was a sense that this was also a new opening for them, like almost a sense of liberation from a situation that had become so completely untenable to them.

And I think that's something that sometimes gets lost in the public dialogue about this.

But I was always struck by this idea of embracing death.

And that's not an easy thing to do for any of us.

But in order to go through all these processes with these laws and to qualify, you need to be very clear and understand and acknowledge the fact that your life is ending.

- And beyond a shadow of a doubt, that's so difficult.

There's so much denial out there that that's a really difficult concept.

And for Jack, he absolutely valued life.

He would've kept going.

He had twin grandsons who were two years old.

But his body was done.

And a part of his acceptance of this was also doing the hard work of wrapping up his life, getting a sense of closure.

So that meant doing things like meeting with his lawyers and putting his financial affairs in order.

It was important to him to leave a legacy for his family.

He also did the incredible work of communicating with his family and friends and talking about this and talking about why it was important to him, and having a dialogue with them if people wanted it.

So that sense of closure, I think is also an interesting part of this process that's a little different.

- Yeah, and I think what's so interesting about assisted dying, is that it allows for a completely different engagement with the end of life.

So you are able to be a little more intentional about everything that needs to happen around death and dying than you could have been before.

So I'm really thinking about this idea that assisted dying inverts the traditional timeline of what happens when somebody dies.

So things that would normally happen after somebody dies, giving away possessions, coming to terms with their death, putting your finances in order, and all of those things and saying goodbye, really celebrating your legacy even, all of those things can happen before, with the person still there.

And it also means that the family can start grieving early because there's no denying what's about to happen.

- It's so true.

And you know, I think we do see some of those deaths, some of this wrapping up happening when people start hospice, you know, early enough as well.

And for Jack, it just so happened that his birthday was one month before he died, and so he did have a celebration of life.

He invited people from across the country to come.

And I never will forget the importance of anticipatory grieving for me.

I was with my son at this party.

We were at the hotel and he was eight, and you know, his world was all about the free waffle at the breakfast that morning.

And so there he was, you know, just, he's really into it.

And I was sitting across this tiny table from him crying.

I just had tears streaming down my face and I was okay with it.

And I was okay with sharing that moment with him to say, I'm really sad right now because I know Grandpa Jack is dying and it's gonna be soon.

And I love it that you're enjoying your breakfast, you go for it.

We're gonna go say goodbye to grandpa later.

But that anticipatory grieving, I really think helped also set me up for a more peaceful grieving process afterward as well.

Anita, I'm curious, when you first started studying all of this, is there anything, you know, working with people like Ken, is there anything that really surprised you initially?

- Hm, so I have to admit, when I first started working with patients like Ken, I was always surprised when they met me at the door.

I know that sounds really weird, but I wasn't expecting them to be walking around anymore.

I had this preconceived notion that they would be bedbound, that they would lie there frozen.

And it was really only after I started talking with them and understanding where they were coming from, that I realized that you can never know what goes on in somebody's life.

You can never know how much they're struggling, how much they're suffering.

And in so many cases, you know, a lot of this suffering is physical, but in just as many cases, it's kind of this existential suffering.

So not only are you feeling imprisoned in your body and you're feeling as if your body is betraying you, but you've also, a lot of the patients that I got to know just had a real sense of losing sight of who they were.

Everything that kind of made them who they were, they were no longer able to do or say, you know?

I mean, Ken couldn't write music anymore, he couldn't do paintings, he just was watching TV.

But he didn't care who won or lost anymore, he said.

He just, he was done.

He wanted for it to be done.

- We found that for Jack, the sense of comfort that this brought was profound.

This is gonna be our last remarks, by the way.

So if anybody's ready for their questions, it's gonna be coming up.

So for Jack, there's a lot of steps going through these laws.

And so getting through those steps is quite a process.

He had to find out if his doctors would participate.

Thankfully, his primary doctor and his oncologist did decide to participate.

There's a first request, there's a second request, there's a waiting period, there's, you know, a consulting physician, there's a written request, there's qualifying for the medication, finally finding a pharmacist who will dispense the medication and then learning about that.

Luckily he had a pharmacist who counseled him on that process.

But once he qualified and had that, he relaxed.

He relaxed into living the rest of his life without worrying about the process of dying and if he would still be able to take the medication on his own.

One of the stories that mom tells is that his last meal, one of their last meals, they would go to Outback Steakhouse together, and he had been struggling, which is not uncommon, to swallow at the end of his life.

And so he was drinking a lot of smoothies.

And she said that by this time he had qualified, he had the medication and they went for their dinner and he was able to eat that meal just perfectly.

Just went down.

And so it just, it was just a nice example of how this whole process just seems to bring comfort and peace, whether you use it or not.

So we are about to begin the audience Q and A.

Again, I'm Lisa Vigil Schattinger, executive director of Ohio End of Life Options and moderator for today's conversation.

We are joined by Anita Hannig, anthropologist and author of "The Day I Die, the Untold Story of Assisted Dying in America".

We welcome questions from everyone, City Club members, guests, students, and those joining via our livestream at cityclub.org.

If you'd like to tweet a question for our speaker, please tweet it at @thecityclub.

You can also text your questions to 330-541-5794.

That's 330-541-5794.

And the City Club staff will try to work it into the program.

May we have the first question?

- This is a question that came in via text.

Could you explain the language that is often used around this?

What is the difference between euthanasia, physician assisted suicide, and medically assisted dying?

- I'll take this one.

- Great question.

- So this is actually an excellent question because there's so much conflation that happens around language and so many opinions about this.

I can tell you one thing for sure.

Euthanasia is not legal in this country.

Euthanasia means a physician or a clinician injects you with life ending medication.

That has never been legal in the United States and probably will never be legal here.

It is legal in Canada where patients have the option of either ingesting the medication or having a physician inject them.

And this is a really crazy statistic that always hits me when I hear it, 99% of people choose for the physician to do it rather than ingest the medication themselves.

But it is not a legal option in the States.

So up until recently, our vocabulary didn't really have another way to refer to this idea of intentional self death other than suicide.

So when you hear the word suicide, that's kind of the only way that we can think about kind of self death, until recently.

But in the last 20 to 30 years, this new idea about around medical aid in dying has emerged really almost as a new legal and moral category, because when you're talking about somebody who is terminally ill, they're not suicidal, it's not, so they're dying, their death is coming towards them like a barrel, like sorry, like a rock barreling down a mountain.

And all they can do is to either let themselves be hit by that rock or to preempt it with an assisted death.

And so a lot of people argue that it's actually, it's a damaging conflation to continue to refer to these deaths as suicide because we're talking about an idea of dying that's collaborative, right?

It's a physician, it's the family, it's the patient, it's social workers, everyone is working together and it's socially sanctioned.

It's not happening behind closed doors, and it's not a violent ending.

And the law actually makes a really interesting and important distinction between people who suffer a mental illness and who are clinically depressed and might be suicidal, and patients who seek assisted dying.

And if there's any question about whether or not somebody has clinical depression, they must be referred to a mental health expert.

And if that person finds that they have suicidal ideations, then they're not actually able to follow through with an assisted death.

So that's a really important distinction.

And the language around suicide is also really punitive for patients and families because it adds to the stigma of saying, oh, so and so, you know, used medication to end their life versus so-and-so suicided.

And it leads to families hiding their grief.

It leads the patients not being forthcoming about what they really want to do.

And in my eyes, it's a harmful conflation.

And I think it's time that we, I mean, language is a living tool, that we sort of acknowledge the fact that this is a new category.

- Your work, your interests very much overlaps with some of the work of Peggy Battin at Utah.

And another similarity is a magnificent command of language and an ability to write just gorgeous, powerful moving prose.

I'm wondering whether you have ever worked directly with her and also whether you have a connection with the Completed Life Initiative, to which I was referred also by Peggy.

- Thank you so much.

I've not worked personally with Peggy, but I have read her work, I know of her.

And the Completed Life Initiative is a new organization that was founded I think a few years ago in New York, and they do a lot of education around death and dying and the end of life.

And I think I'm scheduled to do some sort of lunch with them at some point, a lunch talk, we'll see.

But yeah, great, great folks, thank you.

- And I would add that they do fantastic work.

They have lots of different seminars on lots of different topics about end of life issues.

And there are more and more types of organizations having these conversations about death and dying.

So I think we're seeing a change coming.

- Thank you for sharing these very intimate stories in such a beautiful way, both of you.

I wonder if you, one or both, could speak to family members who may not be where the dying individual is.

And you know, how you've maybe worked with or helped people to kind of reconcile their lack of acceptance of this way of dying.

- That's a great question, thank you.

So maybe I'll start.

So in my experience, families who oppose assisted dying do so for a variety of reasons.

Sometimes they are just morally opposed, but sometimes it's also the fact that their loved one has chosen this path basically rubs into their faces the fact that they're dying.

And so it's really in opposition to, sorry, what am I trying to say?

Acknowledging that death is coming, which is why they're opposing it.

But they often do come around.

And because the alternative is that they are just not part of things, that they won't be invited, that nobody will tell them that this person is moving ahead.

Because it can be quite painful if one of your family members isn't supporting you on this pathway.

That is such a difficult decision that nobody takes lightly.

And then to have family opposing that can be very difficult for the person who's undergoing this process.

But the involvement of family varies.

You know, it may be that, oh, I don't wanna be a part of opening up the medication.

Let's have a volunteer do this, or mixing together the medication, or I don't wanna be in the room with you, but I'm happy to say goodbye.

So families tend to negotiate their level of involvement.

And maybe the level of involvement is, I'm gonna see you right before, but I don't want any part of it or I never wanna hear about it.

And so I think there's kind of a negotiation that happens in terms of like, how comfortable are you with this process?

But some people never come around, and then they just will not be part of this process, I would say.

- Yeah, I think that in general we have to acknowledge that families can be messy.

(audience chuckling) And there is no less, it's not less so in this whole realm.

But I think it can be such a unique conversation too, that it really can take a whole different turn as far as how people choose to support their loved ones.

And we also see, as with everything else, maybe it's not a genetic family, but chosen family who end up being a part of this process.

- Lisa, I was curious about your personal timeline.

If you had been involved with this prior to your experience with your stepfather, if you had been living in Oregon, then moved to Ohio and realized there was an opening here, how exactly that one fed into the other or lined up or whatever?

- Thank you for the question.

This is where I have to admit, I'm originally from Oregon, so I was actually living there while they were debating their law.

They voted on the law in 1994.

And so I was living there, I was working as a medical assistant in a doctor's office.

It was relevant in our family.

We had a loved one with breast cancer.

So even though I was in my early twenties, it was very relevant and we really were discussing this law.

And then I moved away and didn't think about it that much.

And then my mother and Jack would spend a lot of time with us here in Cleveland.

I moved to Cleveland like 25 years ago, so I've been here a while.

And then when Jack was diagnosed, he quickly said, you know, I'm using this law.

And it was no surprise to me.

I realized then that it had been a part of my life without me even realizing it.

And we had had enough conversations about end of life issues that I was not surprised.

But then I am an, what's the term?

I'm a surprise advocate.

I had no idea I would jump into this with two feet.

I was literally, felt like Jack's hands are on my shoulders and just keep propelling me forward.

There was no law here in Ohio.

There was no group active to do this.

And so I just decided that we needed to have this discussion and founded the organization in 20, he died in 2014, I founded it in 2016.

- My question is financially, like once this law is approved, I just wonder, would it be available for people who can't afford those resources to say, okay, I'm gonna have this doctor, I'm gonna have this end of life treatment.

Will it be affordable because, and age wise, is there a age stipulation where you might have a teenager who has, now cancer is running rapid within children and older adults?

Is there an age group that this is for?

And financially, will it be financially affordable for everyone?

And then one more thing I wanted to add, the diagnoses.

What is the diagnoses?

I know you talked about prostate cancer, which I know that's a fast, once it comes, your dad, you know, you pass away pretty quickly.

But what other diagnoses do you have to have to be able to qualify for the service?

- Thank you so much.

So I'll start here, so great questions.

You have to be 18 years of age, and all of the, so we've said 10 states have, 10 states and DC have legalized assisted dying.

In all states, you have to be 18 years of age to qualify.

So you have to be a legal adult.

You have to have a terminal diagnosis of six months or less to live.

So a doctor needs to have certified, actually two doctors independently of each other have to have certified that you have six months or less to live.

So it doesn't really matter what you have, as long as it's six months, you would qualify.

There are some caveats to that though.

None of the states do patients with dementia, advanced dementia or Alzheimer's qualify because you have to be of sound mind, you have to be able to make rational decisions.

And once you have advanced dementia, that's no longer possible.

So that is one whole swath of the population that is not included in assisted dying laws and I don't think will be included anywhere near in the future.

And to your last kind of financial question, there was a time when the medications became really expensive around 2015.

There were some kind of drug policy things where one pharmaceutical company got bought out and then there was an impasse of medications.

And for a while their medications were between $3,000 and $4,000.

Now there's a new drug protocol that's much more affordable.

I think it's around $500 to $700.

And in Washington state and in Oregon, there are organizations that can help you defray the cost of that.

And it also depends, I mean, there are a lot of physicians that volunteer their time, so you don't have to pay for those consults, or sometimes you can bill insurance, but federally funded insurance programs won't fund it.

So Medicare does not fund it, and the veterans insurance doesn't.

- My curiosity is how society places such a heavy importance on people's final words.

Did you find a commonality among people's finals words as they underwent this process?

And how did the family feel about that as a legacy that that person left to them?

And lastly, I would like to share Steve Jobs' last words that his sister kindly shared with the public, which was, "Wow, oh wow."

(all laughing) - So I think this idea of final words is a little bit of a concept from the movies, I think.

And I think people can put a lot of pressure on themselves and their families to have, you know, a meaningful thing.

What is interesting in the cases that I've seen personally is that the people, so people take the medication and then it takes between five and 10 minutes before they fall asleep, but sometimes it takes two minutes.

And so all of a sudden they're in the middle of a sentence and people are like, what?

(audience laughing) And they're kind of sleeping, you know?

But it's so funny.

So one of the deaths that I talk about in this book is this woman Jean, who was such an advocate, and who, you know, wanted me there to write about her death and stuff, who after taking the medication turns to me, not her family, and goes on this advocacy pitch.

And it's like, you really have to make sure that people know about how terrible this stuff tastes.

(audience laughing) And the name of the law, Death with Dignity, that's such a mouthful.

They need to come up with a different name.

And her daughters were like, mom, a word?

(audience laughing) And I felt mortified, but that's just what, and you know, afterwards I had sat with the daughters, and they're like, that was just like mom.

She would talk to stra, she would, there would always be strangers at our table and they were strangers at her death.

And she said that was so important to her, more important than like, some meaningful final words for her daughters.

- I wonder if we could bring it back to Ohio, and Lisa, if you would tell us where we are, what's been proposed in the past, where are we in Ohio?

- Thank you, Ruthanna.

Ohio, I'm gonna talk about our organization for just a moment.

We have Ohio End of Life Options, which is a 501c3 organization that allows us to raise awareness and provide fact-based education about this as an issue.

I thank Muffy Kaesberg for our being our board chair.

We also have a political fund, a 501c4 political fund.

Thank you to David Goodman for sharing that group.

And so our group is doing the hard work of really raising awareness about this as an issue.

It's not something, we don't talk about death and dying and so we don't talk about assisted dying.

So we go to every, you know, any type of organization and talk, have really good respectful conversations about this.

We dispel myths all the time.

I find that after I'm done with the conversation, it always ends with someone saying, oh, that's so interesting.

I thought, you know, blank, whatever it is.

They thought it was something different than what it is.

And so when I first started this, I found a Senator, Charleta Tavares, who was interested in proposing legislation, and she did in 2018.

So we were one of those states that had a bill.

She then was term limited, and so the bill went with her.

So we now are doing the work of talking to everyone possible to see if we can find another sponsor.

We are really aware of the political landscape in Ohio, and it's a challenging issue here.

And that's okay because it just means that we all have to work on having these conversations.

It will not happen if I do this alone.

And so if this is something that speaks to you, I invite you to join us or get involved in a way that makes sense to you, because that's the way to move things forward in Ohio.

We do also have the option for a ballot initiative, and that's an important option.

It's an expensive option.

So those are some of the things we're working on.

- Hi, my question is two part.

First of all, in hearing what you were talking about, of needing to be of sound mind, no Alzheimer's, no dementia, nothing like that.

I think that rules out a lot of people that might have qualified one year earlier, three years earlier, and really had known what they wanted previously.

Is there some way either for state of Ohio, if we, when we pass this or other states to initiate something like they do on your driver's license now where you check a box, I would like to be an organ donor, I would like to reserve the right, I am of sound body and mind at this time, and these are my wishes.

Any thought of that?

And my other question is, you were talking about that there's a timeframe between requesting all the hoops that you have to jump through to get the medication.

What happens to the person that finds out that they have two months to live?

Is that enough timeframe?

You know, what is the timeframe, I guess is what I'm asking, from initiation to receiving the medication and the ability to take it in your own hands?

- Thank you, I'll answer the second question really quickly.

It depends on where you live and how well connected you are to one of the end of life organizations that can refer you to physicians who already work with assisted dying patients on a regular basis.

So in most states that have waiting periods, it's 15 days between your first oral request and your second oral request.

And, but you know, it might take a while to make an appointment with a physician and then, but it's really the 15 days that you have to wait.

And then in some states it's another 48 hours to call the prescription into a pharmacy after that.

But you know, people who choose an assisted death are so close to the end of their life.

A lot of them don't make it through the waiting period.

1/3, I think the statistics that I've seen is 1/3 of patients die during the waiting period because they're so close to death.

But to your question about dementia and Alzheimer's, I don't see a legal scenario where a doctor would say, oh, you can't give me consent now.

But three years ago you said that you would wanna die, you know, once you reached this point, but which doctor is then going to say, so here, here's your medication, right?

So what if you still, what if you changed your mind but you're not able to articulate it?

But if you still find joy in the things that you didn't think you would find joy in.

And so that's a really tough place for doctors to then say, no, no, no, you signed here and it says, so yeah, we're gonna go ahead with that death for you.

So currently it's unthinkable if there's still a six months timeframe for terminality.

So, but it's something that a lot of people are having a lot of discussions about, because I think by 2050, I've seen statistics, about one in five people is gonna have Alzheimer's.

- And so quickly, we ask that you, please seek out a dementia provision for an advance directive.

That's one of the ways to address this, it's different.

- Thank you so much Anita and Lisa.

(audience applauding) Today's forum is part of the City Club's authors in conversation series in partnership with Cuyahoga Arts and Culture, the John P. Murphy Foundation and the Cuyahoga County Public Library.

Also our gratitude to Ohio End of Life Options and Laura Taxel for their support with today's conversation.

We would also like to welcome guests at the tables hosted by Anne Roland and Gordon Kinder, the Cincinnati chapter of OLEO, David Goodman and Barbara Holly, Fodi and Manning, MC Squared STEM High School, Ohio End of Life Options, and Ruth Anna Carlson.

Thank you all for being here today.

Up next for the City Club on Tuesday, June 6th, the City Club will welcome back Pulitzer Prize-winning journalist Wesley Lowery for a discussion about his new book, "American Whitelash, A Changing Nation and The Cost of Progress".

And then at Wednesday June 7th, policy analyst and state budget expert, Dr. Howard Fleeter, will join the City Club for a conversation about the state's education funding.

And finally, on Friday, June 9th, we'll hear from Chasten Buttigieg, author, teacher, and husband to Secretary of Transportation Pete Buttigieg, on his new young adult adaptation of his book, "I Have Something to Tell You".

Emma Henderson with WKYC will moderate that conversation.

You can learn more about these and other forums at cityclub.org.

And that brings us to the end of today's forum.

Thank you once again to our speakers today and to you, our members and friends of the City Club.

I'm Cynthia Connolly, and this forum is now adjourned.

(audience applauding) - [Narrator] For information on upcoming speakers or for podcasts of the City Club, go to cityclub.org.

(cheerful jingle) - [Narrator] Production and distribution of City Club Forums on Idea Stream Public Media are made possible by PNC and the United Black Fund of Greater Cleveland Incorporated.