Choosing death on one's own terms

CATHY WURZER: It did not get a hearing in the 2023 Minnesota legislative session, but a bill was introduced that would allow people of sound mind with a terminal illness to choose the time of their death with a physician-prescribed dose of lethal medication. There are other ways to hasten death. A Minnesota woman and her daughter were public about a specific exit strategy, a decision that resulted in her recent passing.

Cheryl Hauser, who was diagnosed with Alzheimer's disease in 2019, decided to end her life on her terms before the worst of the disease took effect. To do that, she planned to stop eating and drinking. It's a process known as VSED-- voluntarily stopping eating and drinking. And this spring, she did just that.

Cheryl died on June 2 at the age of 76 with her family and caregivers making sure she was comfortable and without pain or anxiety. Her daughter, Wendy Longacre Brown, is an end of life doula and was active in helping to plan for and chronicle her mother's death. Wendy is on the line right now to talk about it. Thanks for being here, Wendy. Good to talk with you again.

WENDY BROWN: Thanks for having me, Cathy.

CATHY WURZER: You and your mom were on this show a while back to talk about her decision to use VSED when she felt her quality of life was not what she wanted. And your mom, oh gosh, was delightful and insightful. It was a lovely conversation. Give folks who didn't hear the conversation an idea of who your mom was.

WENDY BROWN: Oh, my mom was truly larger than life. She had a presence that made a mark on many lives, be it through her education with young children or in her community at church, ringing the bells. She lived a rich life with travel, and entertaining, and a lot of time spent with her family and friends. So she was a very active human, I would say, and also very open about her beliefs around death, but in many other ways as well.

CATHY WURZER: She certainly was. As you know, Wendy, given what you do, many people choose to live until the end of their life with Alzheimer's or whatever their life limiting illness is. And there are a variety of reasons for living until a natural death, at whatever time that occurs, happens. But your mom decided to choose VSED. Why was that?

WENDY BROWN: She chose to use VSED for a few reasons. One, her brother, Will Hauser, was diagnosed with Alzheimer's about eight years ago. He died after suffering, I'd say, for three, four years, which mom witnessed.

And at the time, she didn't know yet-- she hadn't been diagnosed with the disease. But they had a feeling that it was in their family, that their parents died years before in '77 in the world's largest plane crash. So they didn't have a history of this, per se.

But when mom was witnessing especially the last year, year and a half of her brother's life, it was emotionally exhausting. And she wasn't the caregiver that was there, but she just saw what he went through. And at the time, she didn't realize that there was the option to VSED.

So a year before she had been diagnosed, I introduced to my mom this Choosing To Die book that was written by Phyllis Schachter. She's out of Seattle. And she was the caregiver for her husband, Alan, who found out about a VSED option to hasten death. And he also had dementia.

So once mom read this book, it was just a quick read, she knew wholeheartedly that this was a decision that she would make if she was, indeed, diagnosed with Alzheimer's, which did happen a year later. So I would say once she was diagnosed, she came to me a couple of weeks later and said I still would very much like to VSED. That's how I want to end my life. And it was four years later that she made that decision.

CATHY WURZER: It doesn't sound like an easy way out, though, Wendy. It takes, what, 7 to 14 days. It's death by dehydration, which sometimes isn't so easy, you know? How did it go for your mom?

WENDY BROWN: It was, for the most part, what we foresaw how the days would fall into place. Mom being such a busy vocal human, she wanted to have people around her. So we knew going in that she wanted to have distractions with music, with friends visiting, the luxury of being able to VSED in May.

She was often back and forth from their porch to back into her room. And we also had hospice support, which is really the only way that you can VSED. So she had medication that helped to ease any anxiety. Or once her legs and bones became a bit more dehydrated and they felt a little achy, then we could start morphine.

So there were times that she did ask for water, and we reminded her of why she had chosen to VSED. And she never fought it. Once she was reminded, she'd sort of roll her eyes a little bit-- that's right. OK, what's next? And we always had other options to comfort her, be it sprays in her mouth-- little sprays of water, spoons that were in the fridge that she could suck on, mint that we would put into her mouth.

And then we would just start singing to her and rubbing her head. And then that always calmed her down. So they were long days, no question. But compared to what she could have gone through in the next two years of her life of starting to be more scared, not recognizing her family, not able to feed herself, those are scenarios that she didn't want to fall into.

CATHY WURZER: And I should say that folks, I was looking in what was going on your blog, and you had some daily videos of what was happening with the visitors, and there was a lot of singing, and talking, and that kind of thing. What was the reaction from people? Did you run into folks who said, oh, wait a minute, what is this?

WENDY BROWN: I'm sure there are those ideas and thoughts out there and those that disagree with mom's choice to VSED. We haven't had a strong negative reaction to her choice. There was an article in the paper on Sunday in the "Star Trib-- and even in the comments section, I haven't looked in a few days, but I looked on Sunday evening and there was one, and it was more of a religious comment of I'm not sure this is how God intended death to look like.

And that's OK. This is an option. We're not saying it's the option, but it is the option that mom had decided. And I think if anything, if you want to use VSED to place that in your health care directive as a potential that you want to continue to talk about with your family if you have something, be it Parkinson's or dementia, that you would want to consider using VSED, the whole idea is that you're actually talking about options.

And so if you decide to make this choice that it's been discussed with your family-- mom has been so passionate for a while about this. So yes, it's hard to make the decision when to start. But she never questioned the decision itself ever. She just had a hard time saying goodbye.

But we knew that was the case. She was a lover of life, and people, and experiences. Yeah, and she had some friends that would question it. But once they saw how passionate mom was-- and they also could start seeing that she became frustrated often throughout the day with just not knowing what to do.

When you run out of things to be able to make decisions about be it like what earring to put on or you can't put your underwear on, you don't feel like you're living a life that is dignified. And she was so tired of just not knowing what was next and not having a purpose. And so the fact that she was able to shift to my purpose is now to educate people about this choice, it really gave her such a gift in this last year of her life. It was beautiful.

CATHY WURZER: You're a professional who walks with people and their families through life's last chapters. And I think every death can teach you something. What lessons did your mom's death teach you that you'll take with you?

WENDY BROWN: That's a wonderful question. It really is about living life until the last breath. Yes, as a death dealer, we say you're actively dying. But you're also actively living.

And so to know that you have this choice around you-- and if you decide that you want to stop a treatment, if I find out that I have cancer and at some point I say, well, I might not live as long, but I want to live a more comfortable life that I get to choose-- but it's a lot about slowing down and having more.

She loved movies, but she was much more of a face to face person and writing in her journals. And when I was creating her eulogy, it was a difficult process, but it was also lovely because I had these stacks of information that were meaningful to her.

She would write down quotes. She would write down her values and just hand them to me. And she's been doing that literally for 10, 20 years-- way before she even thought she might have Alzheimer's. So I would say always setting aside what is important, what you value, because we simply don't have control over, at times, when our last breath might be.

And so it is never too early to write out your health care directive. I'm 49, but even as a 30-year-old-- just because if something happens and you want your family to know. So it helps your children, your grandchildren, your spouse, your loved ones prepare and know what the direction is from their loved one. And so it certainly slows down any confusion or fighting around what the end should look like and decisions around the end of life.

So I think the more that we're talking about-- and the less scary it becomes, and the more it's just part of a conversation. And then you can live life even more fully than if you're walking around scared of when your last breath might be. So I think it's to live in the moment. And, truly, it's to live out loud. That's how she lived.

CATHY WURZER: Live out loud. I like that. Your mom really was such a vibrant person. Wendy, my condolences to you and the family. Thank you for being open and for a really insightful conversation. Thank you so much.

WENDY BROWN: You're so welcome. Thanks for having me.

CATHY WURZER: That was Wendy Longacre Brown. She's an end of life doula, daughter of Cheryl Hauser. Cheryl died June 2 at the age of 76.