A Life & Death Conversation with Dr. Bob Uslander - Debbie Ziegler Shares Her Daughter's Journey to End Her Life With Dignity, Ep. 30

Debbie Ziegler Shares Her Daughter's Journey to End Her Life With Dignity, Ep. 30

11/15/18 • 51 min

A Life & Death Conversation with Dr. Bob Uslander

Debbie Ziegler's daughter, Brittany Maynard at the age of 29 was diagnosed with a terminal brain tumor she chose to end her life. Her story was controversial and painful. Debbie shares her daughter's journey in life and how she ended hers.

Photo credit: Simon & Schuster

Contact

Debbie Ziegler website – Get a copy of her book, Wild and Precious Life

Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print.

Transcript

Dr. Bob: Well, Debbie, thank you. I can't tell you how much I appreciate you coming and spending time. We've had a number of conversations over, since we met, which was probably a year or two ago.

Debbie Ziegler: Yes.

Dr. Bob: I think each time we talk, we get a little bit deeper into the conversations, and I think we both are very aligned in what we're trying to do with our time here.

Debbie Ziegler: Absolutely.

Dr. Bob: Yeah. I would love to use this time for you to share a bit about Brittany so people can really know who Brittany was. I think a lot of people know the name, Brittany Maynard. It's become, in many areas, a household name, and I think certainly in California, and a lot of people think of her as groundbreaking, but they don't really know Brittany. Hopefully, after this, after people hear this, they'll get your book, and they'll learn a lot about Brittany and about her journey, but I'm hoping that you can share a bit about that, because I think it would be really valuable for people to understand who Brittany was, what she did, and then what you've been doing to carry on her legacy and honor her, so ...

Debbie Ziegler: Well, thank you for asking me to speak with you today. Brittany is remembered for the last act of her life, and those last minutes of her life are relived over and over again and spoken of over and over again. She knew they would be, and before she died, she asked me ... She said, "Mama, make sure people remember me for how I lived as much as they remember me for how I died." That is something that I try to honor her by doing, and one of the ways that I honored her was by writing a book about the way she lived, and I titled it Wild and Precious Life because Brittany did live a wild and precious life. She was very much in love with this world, and when she was terminally ill, she would say to me, "The world is so beautiful, Mom. It's just so beautiful, and I'm going to miss it so much."

She did not want to leave this earth. Nothing inside of her desired that, but the fact was that she was terminally ill, and she had a terrible and gigantic brain tumor that had been growing for over a decade. When I look back at Brittany's life, I try to focus on the brain and how marvelous and plastic it was to tolerate the growth of a tumor for 10 years and to, as that tumor slowly grew, her plastic, resilient brain transferred function. I try to remember that. Even when I first find out she was sick, she had already lived a miracle, and it's important to focus that. The miracle I wanted to happen, which, of course, was that she wouldn't die, didn't happen, but a miracle had already happened in that she had lived 10 years with the brain tumor growing.

Dr. Bob: What a beautiful awareness and a gift. It's so interesting because many people don't have that. Many people have a, are diagnosed relatively quickly after something that starts developing because it's created issues that can't be ignored or-

Debbie Ziegler: Yes.

Dr. Bob: ... their plasticity won't happen, and so everything changes from that moment on. Right? They're thrown into the health care system and start having procedures and treatments, and so ... You know that this is a fatal illness, even when it's caught early.

Debbie Ziegler: Yes. I think that one thing that Brittany and I talked about quite frequently is that every person's disease is different, and it annoyed Brittany that people felt that just because their uncle, cousin, niece, had had a brain tumor, that they somehow knew her journey. The same thing happens to, I think, cancer patients with any kind of cancer. We have to remember, as we interface and speak with and try to love these people through their illness, that every body's illness is different.

Just as our bodies are different, our cancer is different. It can be very, very frustrating for a patient to be told, "Oh, w...

Photo credit: Simon & Schuster

Contact

Debbie Ziegler website – Get a copy of her book, Wild and Precious Life

Transcript

Dr. Bob: Well, Debbie, thank you. I can't tell you how much I appreciate you coming and spending time. We've had a number of conversations over, since we met, which was probably a year or two ago.

Debbie Ziegler: Yes.

Dr. Bob: I think each time we talk, we get a little bit deeper into the conversations, and I think we both are very aligned in what we're trying to do with our time here.

Debbie Ziegler: Absolutely.

Debbie Ziegler: Yes.

Just as our bodies are different, our cancer is different. It can be very, very frustrating for a patient to be told, "Oh, w...

Previous Episode

Understanding Palliative Care, Dr. Michael Fratkin Ep. 29

Dr. Michael Fratkin founded ResolutionCare to insure capable and soulful care of everyone, everywhere as they approach the completion of life. Learn how telehealth applications are bringing a greater quality of living and dying to those in need.

Contact

ResolutionCare website

Transcript

Please note there is some content that is explicit in this episode.

Dr. Bob: Dr. Michael Fratkin is the President and Founder of Resolution Care. Dr. Fratkin is a father, a husband, a brother, a son, a physician, and a very dear friend of mine. Dr. Fratkin is dedicated to the well-being of his community and the community of all human beings. Since completing his training, he's made his home and built his family in rural Northern California. He's served his community as a primary care physician in the community health system, as a medical director of the local hospice, as a leader in the community hospital medical staff, and has been a transformative voice for improving the experience for people facing the end of life.

At a time of great demographic and cultural change in our society, Dr. Fratkin has created Resolution Care to ensure capable and soulful care of everyone, everywhere, as they approach the completion of their life. Resolution Care is leveraging partnerships with existing healthcare providers and payers to provide telehealth services that bring a greater quality of life and greater quality of dying. The palliative care team at Resolution Care openly shares their expertise and mentorship so that people can receive the care they need, where they live, and on their own terms.

In this podcast interview, Dr. Fratkin shares his passion and his intimate experience as a provider of care. He's innovative; he's creative, he's dedicated beyond what I've experienced with just about anybody else who I've communicated with about palliative care and end-of-life care. I think you're gonna find this podcast to be incredibly informative and really interesting.

Okay, Michael, thank you so much for taking time out of your day. I know you've got lots of irons in the fire and lots of people vying for your attention. So I really appreciate having time to connect with you.

Yeah. You know, it's interesting. I always enjoy talking with you. We connect sporadically, not as much as either of us would probably want, but we have been pretty consistent in finding times to connect and catch each other up on what's happening with our lives and our different enterprises. And what's interesting is, after our conversations, I always think to myself, "I wish other people could have heard that. I wish other people had a chance to listen in and hear what we're developing, and sort of the passion that comes out in these conversations." They're so informative, for me, and I find it so inspiring to hear what you're doing and the service that you're providing and creating. So today we have that opportunity so that people are going to be able to listen in on our conversation.

In the introduction, I shared a bit about what you're doing, who you are, but I'd like to have you just do a little synopsis of what Resolution Care is doing currently, where it started from its humble beginnings, and what your vision is for where this is heading.

Dr. Fratkin: I'm a dad, I'm a husband, I'm a brother, I'm a son, I'm a whole lot of stuff. But I'm also what's called a palliative care doctor. And your group of listeners probably know a little bit about what that is, but the way that I describe it for people is that there are really three central elements. That number one, we don't take care of any patients. We support people as they find their way through serious illness. We support people with a team; we support their families. Our team includes nurses, doctors, social workers, chaplains, nurse practitioners, community health workers, and all the people that they don't necessarily see, but that are just as important to creating a container for our care, the back office, and operational people.

So the first principle is, is that we are a person-centered, not a patient-centered, but a person-centered initiative. And that those persons, the reason I distinguish it ... It's not just the patients or their families, but the people providing the care that are centra...

Next Episode

What have We Learned After Two Years of Aid-in-Dying Bedside Care? – Dr. Lonny Shavelson, Ep. 31

Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California devoted to educating about medical aid in dying and supporting patients and families through this process.

Contact

Bay Area End of Life Options

Transcript

Please note there is some content that is explicit in this episode.

Dr. Bob: Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California, devoted to educating medical providers about medical aid and dying, and supporting patients and families through this process.

As you'll soon discover, Dr. Shavelson is an intelligent, articulation and passionate physician, who has a huge heart and is committed to providing excellent care to people dealing with terminal illnesses. He and I are bonded by a similar commitment. We also share a bond in that we were both emergency physicians in the past. We've seen the standard way people are cared for at the end of life, which is often not very pretty, and often not aligned with how they've lived their life.

As you'll hear in this interview, Dr. Shavelson has experienced his own brush with death, which has created far more understanding and empathy than he could've imagined. I hope you find this discussion as informative and interesting as I did.

Well, Lonny, I've been looking forward to this conversation with you for quite some time. I saw it coming up on my calendar. I was excited and woke up today really energized to have this conversation and be able to explore deeply, what it's like for you to be a physician that's in the same realm as I am, in support of medical aid and dying. Thank you for taking the time to speak to me and my listeners today.

Dr. Shavelson: You're really welcome, I'm glad to be here.

Dr. Bob: Yeah. So, just maybe give me a little bit of ... Give all of us a little bit of background, as to how you came to be the physician with Bay Area End of Life Options. What was your journey leading up to that, and what made you decide to venture into this?

Dr. Shavelson: Let's see if I can condense this a little bit. When my interest in going into medicine in general, as happens with many people who go into medicine, comes from a family history of dealing with illness. I think many people in medicine if you ask them this question, why you went in, they'll start off with the, "I want to help people," answer. And if you dig a little bit deeper, you'll find there was some illness in the family in their prior history.

So mine, very specifically, was my mother had Crohn's Disease. It's an inflammatory disease of the bowel. And because of that disease, imagine having cramps and diarrhea all of your life every day and having multiple surgeries on your bowel to try to accommodate it and bowel obstructions and all that. She was a pretty miserable person, and also in retrospect, severely depressed.

So when I was starting at the age of about 14, I became not only aware of the fact that my mother was suicidal, but she enrolled me in pacts for her death. Part of the reason that I was guided toward medical school was because of the, my mother sort of wanting to know that I would be available, not only to help her in her illness but also to help her die.

Dr. Bob: Wow.

Dr. Shavelson: So we used to have conversations around the dinner table about my mother's dying. And I thought that was the normal way people grew up. I didn't, you know ... You know, if you grow up in a certain way, you assume that that's the way it is. You don't have any other experience of any other childhood to compare it with. So I thought discussions about death and dying were what people talked about during dinner.

Dr. Bob: Not me, it wasn't happening at my dinner table, I'll tell you that much.

Dr. Shavelson: Yeah, now I realize that [inaudible 00:03:48] doing that. We didn't have football and baseball on the TV. We had sort of philosophical conversations about death and dying, including suicide.

Dr. Bob: Wow.

Dr. Shavelson: So my mother-

Dr. Bob: We had the Dick Van Dyke show, and the Andy Griffith Show.

Dr. Shavelson: Well, we did some of that too. It falls short to what it was.

So anyway, I g...