Podcasts about life option act

We talk with acclaimed filmmaker Ondi Timoner about her deeply personal 2022 documentary, 'Last Flight Home.' The film chronicles the last days of Ondi's father, Eli Timoner, a visionary businessman and philanthropist who founded a successful airline in the 1970s.'Last Flight Home' captures the final weeks of 92-year-old Eli's life after he decides to end it under California's End of Life Option Act. The film offers a profoundly intimate portrayal of love, loss, and the courage it takes to say goodbye. In our conversation, Ondi reflects on the emotional journey of making the film and the powerful impact art can have on audiences.Actual Facts is hosted by Eric SteuerTheme music by Yalls: https://www.dancasey.me/'Last Flight Home': https://www.interloperfilms.com/lastflighthomeMovieMaker Magazine: https://www.moviemaker.com/ Hosted on Acast. See acast.com/privacy for more information.

On this episode of Common Ground, Bill and Odell welcome Dr. Steve Kline, a cardiologist, to discuss the sensitive topic of euthanasia and physician assisted suicide. Bill shares the poignant story of his brother's final days, and the conversation covers much more.See omnystudio.com/listener for privacy information.

As a Family Caregiver Consultant,  End-of-Life Doula, and founder of Be Present Care, Stefanie Elkins has over 20 years of experience supporting and helping  people navigate challenging life transitions such as caregiving, end-of-life, and grief.   Her expertise includes being an educator and facilitator on advance care, caregiving and end-of-life conversations as well as creating plans and programs for families, healthcare and senior-focused organizations. As the Medical Outreach Manager, an integral part of Compassion & Choices California Campaign team,  she assisted in passing and then implementing the California End of Life Option Act that passed in 2015.    Merging her passions: love of craft beer and encouraging candid conversations on end-of-life, Stefanie created Death over Drafts, a community event held at breweries across the United States to spark curiosity & meaningful connection around death and dying.    In this episode Stefanie shares this passion, and why she believes offering comfortable places to gather and explore the uncomfortable topic of dying and death is so important for society and can inspire how we reignite our intentions on how we choose to live and die.    Stefanie is an accomplished professional and life long learner. Her credentials include completion of the University of Vermont End of Life Doula Professional certificate program and currently in double MA degrees in Management specializing in Human Services and Jewish Communal Service from Brandeis University, and a BA in Social Relations from UC Riverside.    She also holds leadership roles as the LA Unit Chair of the Western Region of the Aging Life Care Association®, and is actively involved with various organizations dedicated to promoting end-of-life choices and providing support to seniors, including Compassion & Choices, Foundation for Senior Services, Coalition to Transform Advanced Care (CTAC), Reimagine, Silent Book Club of Death, and Valley Chevra Kadisha.     Compassion & Choices, Foundation for Senior Services, Coalition to Transform Advanced Care (CTAC), Reimagine, Silent Book Club of Death, and Valley Chevra Kadisha.    https://www.aginglifecare.org/  https://www.bepresentcare.com    LEARN ABOUT DEATH DOULA NETWORK INTERNATIONAL  Contact us at admin@ddnint.com for any feedback or suggestions on podcast guests or topics.    Music provided by Dee Flat and the Benz, used with permission.   

12/22/23: Jim Shaw is a current InForum columnist, and former WDAY TV reporter and KVRR TV news director. He is sitting in for Joel Heitkamp today, and has a conversation about the Minnesota End-of-Life Options Act. This bill will allow a terminally ill, mentally capable adult with a prognosis of six months or less to live, the option to request, obtain and take medication — should they choose —  to die peacefully in their sleep if their suffering becomes unbearable.  Jim is joined by Dr. Rebecca Thoman and Andrea Anderson to have the conversation. Dr. Thoman is program director of Doctors with Dignity, and Andrea is a strong advocate of death with dignity.See omnystudio.com/listener for privacy information.

It is not often that a film captures some of the most tender moments of a family's experience and shares the love and lessons from a beloved man at the end of his life. Ondi Timoner didn't set out to make this film; what she intended was to capture the last days of her father's life. But when she reviewed the hours of film from those last 15 days, and created a 30-minute compilation to share as a remembrance, people who saw it were so touched by the experience that Ondi realized a longer film was about to be born. Ondi and I discuss: What is the End of Life Option Act in CA? Why did Eli Timoner choose “death with dignity”? What was the trajectory of his life and how did he revise his understanding of “success”? How did this experience transform those around him? What can we all take away from Eli's living and his dying?

Eli Timoner lived a life founded on love. As a result, long after an accidental stroke forced him into retirement, he was celebrated by his former workers. And when he died aged 92, on 3rd March 2021, he did so, surrounded by his family. Last Flight Home, a documentary by Eli's daughter Ondi, tells the story of his last days. But more than that, it relates how Eli chose the date of his passing, something he was able to do through California's End of Life Option Act. In this moving and poignant episode of Factual America, Ondi joins Matthew Sherwood to discuss the film, her father, family, and how her experience of his dying and death has made her an activist in support of the right to end one's own life. Ondi speaks frankly about her fears when Eli told her that he wished to die, and how filming him – something she did with his blessing - helped her come to terms with what was happening. She reflects on the differences of opinion that existed within her family over Eli's decision before they came together to see the world anew. She also shares how she believes Eli continues to watch over his family today. Eli's story is not an easy one. But neither is it one sided. As Matthew and Ondi's conversation makes clear, loss is accompanied by grace, beauty, and good memory. Watch the episode at https://factualamerica.com “[Dad] said to me... Ondi, would you rather know the day I'm going to die? Or would you rather get a call in the middle of the night? And it's true, it really allowed us all to prepare, and to plan, and to have closure, and to be able to celebrate, even, his life. And for him, it was like wind in a sail.” – Ondi Timoner

Stewart Florsheim supports a man in his last days and witnesses first hand what California's End of Life Option Act offers.

Dr. Tom Cummings is the medical director of Interim Hospice of San Diego.  A graduate of Stanford followed by University of California, San Diego, Medical School, Dr. Cummings has been an advocate for providing quality care for patients grappling with a terminal disease in the Hospice setting.  Being involved with over 200 patients and friends concerning the End of Life Option Act, he joins the Death with Dignity Podcast to help define Hospice care and share his experiences related to the topicLearn more about the podcast & follow our story - deathwithdignitypodcast.com // @DWDPodcast2021 (Twitter)

Monika Lingle helps us understand the end-of-life process through her experience as a licensed clinical social worker.  Monika's specialties include: Oncology, California End of Life Option Act, Grief Counseling, Pediatrics, Maternal-Child health, Bioethics, Palliative Care, Post Graduate Clinical Supervision, and Advanced Health Care Directive planning.Learn more about the podcast & follow our story - deathwithdignitypodcast.com // @DWDPodcast2021 (Twitter)

Geritalks | New Mexico End-of-life option act. A conversation with MaryKay from End of Life Options of NM guest: MaryKay Brady

Prepare to be moved and inspired by our conversation with Sarah Hill, as she shares her experiences as an end-of-life doula. We will explore the nuts and bolts of her role, how she taps into and influences the experience of dying for her clients and their families, and the ways in which death doulas are reshaping the cultural conversation about end-of-life. We will address how this differs from hospice care, as well as the role doulas play in supporting The California End-of-Life Option Act and Medical Aid in Dying. At Home With Growing Older is proud to be your host of At Home, On Air a bi-weekly radio hour offering connection, community and knowledge to our participants remotely. We invite you to listen and learn from this live recorded episode of, At Home, On Air with Sarah Hill. Learn more, donate today, and register for the next LIVE episode of At Home, On Air: www.athomewithgrowingolder.org

California State Senator Susan Talamantes Eggman joins the podcast to discuss her role as a legislator advocating for the End of Life Option Act, passed into California law on June 9th, 2016.  Senator Eggman was instrumental in the passage of the bill and continues to advocate for Death with Dignity today.Learn more about the podcast & follow our story - deathwithdignitypodcast.com // @DWDPodcast2021 (Twitter)Timestamps:0:00 - 0:19: Intro music0:19 - 1:09: Guest Introduction- Senator Susan Talamantes Eggman1:09 - 10:00: Senator Eggman's background / journey into politics10:00 - 14:55: Senator Eggman's background with the End of Life Act 14:55 - 19:40: Opposition of the End of Life Act19:40 - 21:22: Aversion to End of Life Act / aversion to death21:22 - 24:20: How Senator Eggman's identity has shaped her political career24:20 - 25:00: Universal experience of death 25:00 - 28:40: Difference of opinion / feelings to others with different opinions28:40 - 30:53: How will the End of Life Act evolve (will more states adopt it?)30:53 - 32:45: Senator Eggman's thoughts on the medication / barriers for the individual32:45 - 35:05: Senator Eggman's most proud accomplishments35:05 - 38:50: Proposed amendment for End of Life Act38:50 - 41:05: Senator Eggman's future plans41:05 - 45:49: Conclusion / last thoughts45:49 - 46:11: Close out music

Rubén Rosario is an award-winning columnist for the Pioneer Press. He came to the Twin Cities in 1991 after spending 11 years at the New York Daily News. Rubén talks about his early days as a young reporter in New York covering crime and going undercover for a story about the 1980’s crack epidemic. This was a wide-ranging conversation that covered 9/11, the proposed End-of-Life Option Act in Minnesota, his cancer diagnosis, advice to young journalists, and his Puerto Rican roots.

On the latest episode of the Conduit Street Podcast, Michael Sanderson and Kevin Kinnally discuss the latest news and notes from Annapolis, including an update on the budget, a strange twist on the End-of-Life Option Act, vetoes, veto overrides, redistricting, new rules for ticket resellers, and a proposal to change the definition of milk.

Cindy Hegger specializes in end-of-life photography. She began this stage of her business after photographing activists working in Sacramento to pass what ultimately became California’s End of Life Option Act, a law that allows terminally ill residents to end their life with self-administered drugs. Cindy and her clients treat the end of one’s life just like any other major milestone — something that should be documented with photos and treasured. Her work — and the process of end of life photography, is featured in the latest issue of Alta Magazine. She joins Alta's podcast to discuss her work and why her end of life photos aren't sad, they're joyful. 

We're joined by Dr. Marie-Alberte Boursiquot to discuss her recent testimony in opposition to the End-of-Life Option Act. We also take a look at Maryland Law surrounding issues like physician-assisted suicide and fetal homicide.

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, well, my aunt did this," or, "My uncle did that." Let's just try to take each patient alone and single and look at their disease and look at their illness separately and try not to bring in all these other judgments based on other stories. Brittany's illness, she had been living with, and the tumor had been growing very slowly, and so that allowed for that plasticity. If a tumor grows in your brain in a quick fashion, a much, much smaller tumor could kill you. Dr. Bob: Yeah, or in a different position, a different location in the brain. Debbie Ziegler: This would be the same for other cancers. It would be the same for people with any kind of cancer. Depending on how that cancer, how that tumor's growing, it takes its own cruel path, and so one of my big hot buttons is that we stop and remember that everybody's journey is different, and everybody faces their illness in a different way. The way my daughter faced it was by getting all the information she could get. She was almost an encyclopedia about brain tumors, about the types of cells that make brain tumors, about how those tumors progress in people of certain age groups. She read white papers. She had a good education, so she was lucky enough to be able to read that kind of paper that might put some of us to sleep. She was able to read it and really extract information for it, so when she entered a doctor's office, she was speaking their terminology, and she was very well read, so that is a different kind of patient. Dr. Bob: Yeah. I would imagine that for certain doctors, that would be a little bit ... I'm not sure if "intimidating" would be the right word, but they're not used to that. They're used to having, to doing the education and kind of doing it on their own terms. Debbie Ziegler: Yes. There is, and there is this paternal mold of medicine that's been in the United States for a long time where, for many years, we looked at our doctors as sort of an extra father in the family that what he said was how it went. We had this paternal model where we never even asked the doctor, "Well, what are my options," and we didn't have the internet, and we didn't have this quick way to get information. In the case of my daughter, she was actually checking out medical documents online and reading medical documents. We're in a different place, and we're in a different time. We're struggling with this old, paternal medical model, which isn't working for us well anymore. Then you add on top of that that if a doctor got a scan of Brittany's brain, one doctor said, "I expected her to be wheeled in on a gurney and unable to speak," because the tumor was in that portion of her brain that allows you to speak and vocalize, and it looked like that must, those skill sets must be gone, but because it had grown so slowly, those skillsets had moved, and she was able not only to speak but to speak very articulately. I do think it was a shock, and a little bit more difficult to deal with, with a patient who's very well read and very outspoken. My daughter was, even from a young child, a very purpose-filled person. I remember they observed her playing when they were analyzing whether she was ready for kindergarten, and they wrote in the report that her playing was purpose-filled. That came back to me as I watched her negotiate her illness, and I thought, "Okay, well, those things that made it difficult to mother her, that purpose-filled, stubborn, willful sort of way, was a wonderful asset to her when she was ill and needed to navigate her illness." People ask me all the time about how Brittany could make a decision like this so confidently, and my answer is that she had the innate personality to question and to, and she also had the educational background that she could absorb the scientific information and accept it on a factual level. The emotional part, matching her ability to be emotionally strong, matching her background to be able to understand the information that is terribly frightening, and which, honestly, I mean, I taught science. I couldn't read it in the beginning. It took me about a month to be able to read about brain tumors. I just couldn't do it. [inaudible 00:11:20]. Dr. Bob: You mean you couldn't do it because it was too difficult emotionally or because it was too, the information was too- Debbie Ziegler: It was emotionally. Dr. Bob: Okay. Debbie Ziegler: I also have a science background, and I taught science, so I could read it, and I could interpret it, but as her mother, having just heard that she had a terminal diagnosis with a brain tumor, emotionally I was unable to read about brain tumors for well over a month. This is a part of what happens to the family of the terminally ill person. Sometimes, they're knocked back into a period of denial where they're unable to look at the truths; they're unable to look at the facts. I think that makes it more difficult in some ways, and yet I'm told by psychologists that denial is something that helps us deal with crisis and eventually move on, as long as we move through it and don't stay in that place. I can testify to the strength of denial, and I can certainly say, from my experience, that it is very important to overcome it if you're going to help your loved one. It's something you must battle through and get to the other side. Dr. Bob: I think that's so powerful, and, I guess, recognizing that it's happening, being open to recognizing that, and that it's normal, and you don't have to rush yourself through it, because it is a process, but if you're not aware that that's what's happening, then it seems like it's the reality and it's appropriate, and would be much more difficult to get through it and be of support as you ultimately want and need to be, so ... Debbie Ziegler: Particularly if the patient gets to the point where they are out of denial. Many terminally ill people quietly, but firmly, believe that they have a pretty good handle on how much time they have. Something inside them says it's not going to be more than a few months, but they, if they're surrounded by people who are in denial, they have no one to discuss that with. They have no one to say, "Look, I'm dying." My daughter, because of her youth and because of who she was, said to me in the hospital one night, she was in her bed, and I was climbing on to a gurney next to her, and she said to me, "Mama, you get that I'm dying, don't you? I need you to get this." It just ripped my heart out, but at the same time, I realized, "Oh, my goodness. I have to look at this. I have to turn around. I have to stop running and pretending that I can find some miraculous doctor in some other country," which is what I was dreaming of at that point. "I have to turn around and look at my child who is telling me, 'I'm dying.' I have to be with her in that moment." I'm telling you, it's hard, and I'm also telling you it's really important for the patient, really important for the patient to be able to say, "The people that love me get it. They get it. I'm dying, and they get it." Dr. Bob: "And stop wasting my time." Right? "I'm-" Debbie Ziegler: Yes. Dr. Bob: "Be here with me, because we don't have a lot of time for what we need to do." Debbie Ziegler: In her case, she wanted us to listen to what her desire was for the rest of her life, what it was going to look like, because being told that she had about six months to live, Brittany immediately sprang into her list of, she had a bucket list of places she wanted to visit. She had a list of people she wanted to talk to before she died. She had a list of accomplishments that she wanted to be able to be a part of, which included, in the beginning, she wanted to write some articles. She decided she wanted to write articles because the medication she was on to keep the pressure in her cranium down from this gigantic tumor causing this pressure, she was taking a lot of steroids, strong steroid medication, and steroid medication at that level has some pretty gnarly side effects. It makes you get this round, very full face, which they refer to in medicine as a moon face. Brittany thought, "All right, because I don't want anybody taking pictures of my moon face, and that way, I can write an article and still have an impact and advocate for other terminally ill patients, but I won't be seen." Then as it turned out, and as many people know, that is not the path that it took, and she was asked to have her photograph taken, and then she was asked to be filmed, and then she was asked to be interviewed. All of this was done when Brittany didn't look like Brittany anymore, and she cried, and she said, "I just see cancer in that face. That doesn't look like my face. That looks like the face of cancer." I know what a sacrifice she made to do this for people. We talked about how it was normal at 29 to feel feelings of vanity, yeah, a little bit, as you're a woman and you don't want to look bad, and how she was going to overcome that. Of course, as her mother, I kept saying, "You're so beautiful, Brittany. You are still beautiful. It's just a different beautiful." She would be like, "Oh, Mama, you're my mom," but I just want people who are ill to know that those last six months that my daughter had were some of the most productive month of her life. She had a sense of urgency and joy. In between sadness and terror, there were these moments of great joy and satisfaction, as we walked through a particular place in nature that spoke to her. She'd call me, "Mama, come and look. Come and look at the banana slug. Come and look at the starfish. Come and ... " We shared those moments of joy because she faced her illness, and she was not going to waste that time. That required decision-making. That required saying, "No," to some treatments that she felt, after reading about them, we're not going to buy her any significant amount of time, and while she did those treatments and did not receive significant time, the treatment itself was going to deteriorate her lifestyle. Her quality of life was very important to her, and she said, "If I'm not getting any measurable upside here in the way of extended life, then I need to be looking at the quality of the little life that I have left," and so she remained focused on that, and she remained strong in the face of some pretty persuasive and, in some cases, almost bullying that went on in the medical system of, "You must do chemotherapy. You must start it on Monday." Even her oncologist, after doing DNA testing, told Brittany, "You aren't a good candidate for chemo." She said, "Your DNA, your markers, are indicating that you're not a good candidate. There's a very, very small percentage of chance that chemo would do you any good, and there is some chance that chemo could actually make your tumor grow faster because you have a glioblastoma now." Dr. Bob: Certainly, it would deteriorate her quality of life, which she knew, and yet still there were physicians who were part of her team who were pushing her. Debbie Ziegler: Definitely pushing that. She stayed with her oncologist, who she felt understood chemo the best more than the surgeon, and she said, "Your own hospital just wrote a paper about chemo not always being the right answer for the brain tumor patient, and so I'm saying, 'No.' I know that you know this within these halls, and I'm not going to do it. It doesn't have enough of a possibility of upside for me, and it has a definite downside that's very well known. The symptoms that will take away my ability to do some things that are very important to me," one of being that she wanted to travel to Alaska, and she wanted to ride in a helicopter in Alaska and land on a glacier. She wanted to go on a dog sled and cross a glacier. She wanted to move in a dog sled on a glacier that was moving on a planet that was moving in a solar system that was moving. We wanted to be moving in time and space, and we did it. Dr. Bob: That's wonderful. That's awesome. Debbie, at what point, at what point after the diagnosis, did the whole concept of medical aid in dying come into her awareness and start becoming a bit of a focus? Debbie Ziegler: For Brittany, her focus on aid and dying came much more quickly than anyone else in her family, because, at Berkeley, she had been in a psychology class where they had had a discussion about end-of-life options. Her class had heatedly argued about end-of-life options, and so Brittany had already thought about this, discussed it, and, quite frankly, been a participant in a conversation at a high level. As soon as she was told, and she did ask directly, none of her family could or would, because we were all in denial, she's the one that forced the conversation and said, "Is this brain tumor going to kill me? Is this a terminal brain tumor?" She was told, "Yes, it is terminal. At this point, until we have tested this cell structure, we don't know how long, but we do know this is what you will die of." As soon as they told her that, she began discussing end-of-life options. She did not know how long her life would be, but she did know that the tumor was going to take her life, and she knew enough from her science background of the course of action that a brain tumor takes that she knew she wanted to be looking into other options rather than just following a natural course. Dr. Bob: How fortuitous for her, not maybe fortuitous at all, but that she had had, been exposed to it. Debbie Ziegler: Yes. Dr. Bob: Not a lot of 28, 29-year-olds are- Debbie Ziegler: No. Dr. Bob: ... and so it could have been a very different process, and path had that not happened. Debbie Ziegler: The way she introduced the topic into conversation was, I think she was trying to spare us until she could discuss it with her parents, but she said to the doctor, "How can I get transferred into the Oregon medical system?" That, of course, to everyone in the room, seemed like an odd question, and in the back of my mind, because I am a science teacher and, of course, had read articles, I thought, "Oregon. Oh, my goodness. I know why she's talking about Oregon." I couldn't have told you the details, but I knew that it had to do with the right to die, and I knew what she was talking about the very first time she mentioned it. I knew where she was going. Within seconds, there were two people in the room. I'm sure the doctor knew what she was talking about, although he chose, at that moment in time, to not recognize it, to say, "Well, why would you want to do that? You're in a fine medical system here in California." It wasn't until days later that we had open conversations about why she was interested in Oregon. Of course, since that time, California has passed an End of Life Option bill. I feel that that is my daughter's legacy. I believe that it was her story of having to move out of California in order to die, in order to die peacefully, that touched a lot of hearts and made history in California. I smile when I think of our End of Life Option Act because, in my heart, it's Brittany's act. Dr. Bob: Well, it was Brittany's act, but she couldn't have done it without you. Right? You- Debbie Ziegler: She- Dr. Bob: You were her partner in that. Debbie Ziegler: She had help, and she had many, many volunteers who loved her, who loved her spunk, her feistiness, her story, who immediately gravitated towards supporting her. I have had letters written from all over the world, from all over the world. I now speak with people in an ongoing relationship, some of whom I have met face to face now, and some of whom I haven't, from countries all over the world about Brittany, and some of these faithful people write me every time it's her birthday, every anniversary of her death, every anniversary of the bill being passed, and they tell me how much my daughter means to them, and that they live in a place where there is no law, and that she stands for hope to them, that she stands for hope that one day, all of humanity will treat each other with love and kindness and will not be so afraid of death. It's such a beautiful legacy that it helps me accept that she's gone. She's gone physically from me. Those first few years, grief was so difficult, and I've met so many grieving people, and as I was grieving, I would literally be knocked down to my knees sometimes. I'd be crying on my knees in the hall, or in the living room, or in the kitchen, or one time in a park, another time in a store, like a T.J. Maxx. Here's this lady down on her knees, crying. I would always smile through my tears and know that Brittany would be saying, "Get up. Get up, right now, because you're on your knees crying. It means there's something that needs to be done. Look around. See what needs to be done." The first time, I got up, and I thought, "Oh, my goodness. I just opened an email about how dire the blood shortage was," so I went and donated blood, and now I try to donate blood twice a year in Brittany's name. I pick times of the year when that is hardest for me. I pick the times of year when I know the grief is going to wash over me again. Times, holidays, her birthday, the day of her death, the beginning of the year. I pick times to do the donations when I know that giving blood is going to be this beautiful gift that's going to lift me out of my sorrow. Then I look around and see other things that need to be done. I see an elderly person that needs a visitor or flowers. I see a friend who needs a visit who is fighting breast cancer. When I go into my worst grief, I always hear her saying, "Get up and look around. There must be something you need to do." That is one of the ways I've dealt with grief is by getting up and looking around. Dr. Bob: And doing what, and doing what is- Debbie Ziegler: And doing something- Dr. Bob: ... right there, immediate, in your awareness. Debbie Ziegler: Yes. Dr. Bob: I'm going to, so can we stay with this for a moment? Debbie Ziegler: Yes. Dr. Bob: I know that I've been with you, and you've shared some of your other tools, tips, ways of working through the grief. Debbie Ziegler: Grief, yes. Dr. Bob: I think I would love for you to share if you're up for it, a couple more, just a little bit more about how you've managed to work through your grief or work with your grief as a guide here for some of our listeners. Debbie Ziegler: Well, in the beginning, I have to admit that grief was like, it was a black ocean sucking me under, and I thought, "If I don't do something, I'm not going to make it." I really, first of all, I admitted this to the people I loved who began searching for things that might help me. My sister came to me with a treatment that's called ... I don't know the letters for it. I think it's PTSD, but it's an eye treatment. Dr. Bob: Oh, EMDR? Debbie Ziegler: EMDR. Dr. Bob: Emotional freedom release, yeah. Debbie Ziegler: It is EMDR, and it's rapid eye movement treatment. Because I told people, "I can't talk my way through this. Talk therapy is not going to be enough. I can't do this." This is a scientific treatment where you are asked to follow a light with your eyes. I was probably the most skeptical person on earth that it would help me, but it did, and rather rapidly. It took me out of this circular, negative thinking that I had. I had a few broken records that revolved around Brittany's illness and Brittany's death, and those records would come on and play over and over again, and this treatment of causing my eyes to move while I thought about this, or while I thought about a very stressful day or the actual day of her death, while I thought or discussed about that, my eyes were moving, and it causes your brain to use both sides, the right and left, and your own brain helps you heal and stop that broken record from playing. That is one treatment that I feel very strongly about. I also used the treatment of touch, of various therapies that have to do with massage and different types of massage, to kind of work the tightness that was in my muscles. After being with Brittany and anticipating her death for six months, there was a lot of muscle difficulty, and so I used that. I also have a sister-in-law who sent me ... I also have a sister-in-law who sent me various scents, an aromatherapist, and she sent me a mister. She sent this to us before Brittany died, and Brittany used it all the time to help her try to sleep. That was a difficult part of the last month of her life was getting any sleep, so both she and I used aromatherapy, which is another thing that I sort of, as a scientist, was sort of like, "How can I possibly help?" Yet- Dr. Bob: It did. Debbie Ziegler: It did. In fact- Dr. Bob: Undeniably. Debbie Ziegler: ... my daughter said the two therapies that helped her the most, she said, "Look at all the doctors we've been to, Mom. Look at all the specialists, the high-paid brain surgeons, neurologists, oncologists," and she said, "Look what I'm down to in the last weeks of my life. I'm down to massage and aromatherapy, and these are the two things that soothe me and help me." She used them right up to the end, and she developed a relationship with her masseuse, and she developed a relationship with my sister-in-law, who sent the aromatherapy. Along with these treatments came this human touch and caring that's so important. Dr. Bob: You're singing my tune. I mean, those are the things, of course, that we try to, and it's just, I didn't know that about Brittany's- Debbie Ziegler: [inaudible 00:35:07]. Dr. Bob: ... about what brought her comfort, so it was really, it's, I guess, confirmation, more confirmation about how incredibly valuable these therapies and are ... Not to throw out every other treatment that is being offered through the traditional medical system, because sometimes those are very important, but the value of some of these- Debbie Ziegler: Simpler- Dr. Bob: ... high-touch- Debbie Ziegler: ... natural- Dr. Bob: Yeah. No side effects. What are the side effects of massage therapy? I'm so happy to hear that that was comforting for her, and also for you, afterward. Debbie Ziegler: It was, and we would go together, and friends would send her massage gift certificates. It was a way for them to reach out to her and to give her some solace. We had a special place that we went to and a special group of women who knew her and knew our story, and so it was a safe place that felt safe to go to, and ... Dr. Bob: And that connection. Right? The connection that she made, which was not, didn't revolve around her illness. Debbie Ziegler: No. Dr. Bob: It wasn't going to get a treatment or for someone to check and see how she's progressing. It was a human connection, which people at all stages need, and when we can provide that, it normalizes things. It enhances the feelings of well-being, so this is another pretty powerful reminder of that. Debbie Ziegler: The people that worked in the area that we went to, which was Portland, Oregon, we went to a place there, they never questioned her. They never argued with her. They just said, "How are you today? Where do you feel that ... Do you have places that we need to concentrate on? Do you have places where you have some knots in your shoulders, you just want ... How much pressure?" It was all about, "What feels good to you, Brittany, today? Because we just want to send you out of here feeling a little bit better than you came in." There was no lofty goal to cure cancer. There was no lofty goal to fix this girl who had this gigantic brain tumor. It was just, "From where you start to where you leave, we promise you're going to feel a little bit better." Dr. Bob: In that moment. Debbie Ziegler: And she did. Dr. Bob: Yeah. Debbie Ziegler: And she did. Dr. Bob: That's wonderful. Debbie Ziegler: Yeah. That's a beautiful thing. Dr. Bob: We talked a bit about some of the ways that you moved through grief, which I'm sure part of that was what you, basically what's become your life's work as well. Debbie Ziegler: That was very fulfilling. To be able to testify was very fulfilling, and I felt that my testimony came from a place that was a little bit extraordinary in that, as Brittany's mother, this was not my first choice. This was not; I did not readily gravitate to this end-of-life option idea. I stayed in denial for a period of time. I had to work through this in my head. I had to analyze some childhood beliefs that I grew up with in Texas, so when I spoke with senators face to face, or representatives face to face, and they were reticent, or they had some childhood religious beliefs that were kind of interfering with their ability to even hear Brittany's story, I could relate to them, and I told them that. I told them, "I was you. I was you. The look on your face, my poor daughter had to see. I see you avoiding this subject. I see you turning away from death. I see you turning away from this idea. My daughter had to watch me do that, and that must have been so hard for her to have her own mother not be able to discuss it, to be in denial for a period of time." I felt that my testimony was from a place of, a commonplace that we had, and I felt that in some cases, minds were able to change, or people were able to look inside and say, "Hey, maybe I do need to look at this a little, from a little bit of a different angle." I felt that that was an important truth that I could share was that I didn't start out all gung-ho about this. I knew what she was talking about, and it scared me to death. It really did. It's an important common ground that we had. Then as I went on and spoke in different environments and different countries, I recently came back from Africa, where I spoke at a conference there where people from 23 different countries met in Africa to discuss our human right worldwide to die peacefully when we are terminally ill, to seek a peaceful death. It was very empowering to meet these people who are; literally, you could almost feel the room vibrating with the love and excitement that these people have about making the end of someone's life more tolerable. Coming back from something like that is just, infuses me more with energy and confidence, and inspires me that this is important work, and that I believe that sharing the hardest parts of how it happened and the hardest parts of what we went through in the public eye and as a family who really didn't have very much of a help and assistance ... In fact, we kind of had to claw our way into a situation where my daughter could use the law. I feel like telling those hard parts and just kind of opening my kimono and letting people see the pain, that maybe they will have confidence when, and if, something happens in their own family, that they can say, "Oh, I read about this one time, and you know what? She was in denial, too. That's what I'm in. I'm in denial. I recognize this." Maybe it will help someone get out of denial. Maybe it will help someone not feel so alone. Maybe it will help someone support a patient and say, "What do you think? You are the one who's dying. Let's make a plan, your plan, your plan, because this is your life, and I want to hear what you want to do." Maybe it will help someone look into the patient's eyes instead of running out of the room and making phone calls to try to make something that can never happen. I just, I think that if we don't tell our story and share the humanness of dying, that we're not going to move forward. The more we keep hiding and not talking about it, the less likely we are to be able to face the end of life, which should be a beautiful time. My daughter showed me that. She showed me that, "Yeah, Mom, it's not always beautiful, because I'm 29, and I'm pissed off that I'm dying, but in between being pissed off, I want to live, and I want to experience joy, and I want to go places, and I want to meet people that I haven't seen in a while, and I want to finish things. I want to feel that I've finished some jobs and some relationships and before I go." She wanted a plan, and I think a dying person's plan, no matter what it is, because it may not be what you, as their relative, want it to be, but their plan is really all they have, and so let's support that plan. Let's talk about that plan and what it's going to look like, and how are we going to get it put in place. I think people don't plan. They wait too late. A hospice is called, sometimes, too late. People end up saying, "Oh, I want to use the End of Life Option Act," but it's too late. They haven't left themselves enough time to get the prescription, to write the letters, to wait for the waiting period. The more we can normalize this and discuss this with our families, with our loved ones, with our friends, the more they can plan and make a good plan, and we can help them put that plan into place, but it's not our job to make the plan for them. It's not our job to get in there and say, "Oh, you need to do this, and you need to do that." We need to stop. After they've been told, "You have a terminal illness," we need to slow down a little minute, and we need to absorb that information with them, and then we need to listen. "What do you want to do? How do you want to live these last months?" It can be beautiful. Dr. Bob: And, "How do you want to die?" Debbie Ziegler: Yes. "How do you want to die?" Dr. Bob: "How do you want to die?" Wow. Okay. I think we came to a beautiful place to pause. You and I are not done with our conversations. Debbie Ziegler: No. Dr. Bob: By a long shot. Debbie Ziegler: California's not finished with this conversation, and I think we're committed to- Dr. Bob: Co-create it. Debbie Ziegler: ... making the best of this that we can. Dr. Bob: Yeah. There's a lot of work to be done. There's a lot of lives to support, and so we will have, you and I will have more conversations, and I would love ... I know we talked a bit about what came out of this conference in South Africa. Another podcast devoted to that would be wonderful- Debbie Ziegler: That would be great. Dr. Bob: ... because that would be very educational for people to see what's going on in the rest of the world and what we have to aspire to. Can you share how people can read more about the story and get more information about you and Brittany? Debbie Ziegler: Oh, the book I wrote about Brittany was published by Simon & Schuster, and it is available on all the major online vehicles that you can buy books, I mean, every single one. Amazon, all the bookstores. The title is Wild and Precious Life. I hope that when you read it, it will make you want to live a wild and precious life, because we just have this little bit of time, and we might as well make it wild and precious. I'm Deborah Ziegler, Brittany Maynard's mother. My greatest achievement in my life, my daughter, who I love dearly, was a great model of living a wild and precious life. I would urge you to read her story and benefit from it. Dr. Bob: Yeah. I agree. I second that wholeheartedly. It's a wonderful story. It's hard to read, at times, for sure, but it is a, it's well worth it, and I think you'll gain some really great insights. Thank you for writing it. Thank you for all that you do. Thank you for being here. It's an honor. Debbie Ziegler: Thank you.

For decades Kathryn Tucker has been supporting people's rights to have a peaceful and dignified death. She's fought to protect the medical aid in dying laws. Listen to learn more about the End of Life Liberty Project. 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. Contact End of Life Liberty Project Dr. Bob: Katheryn Tucker is an attorney who's dedicated almost 30 years to supporting the right of individuals to have a peaceful and dignified death in a manner that's consistent with their values. In this work, and in this effort, she and I are very aligned. She helped initiate and protect the medical aid in dying laws in Oregon and Washington State as well as California, and has continued to be a fierce advocate for this right on a state and national level. Katheryn's a graduate of Georgetown University Law School, and she's currently serving as the executive director of the End Of Life Liberty Project, which is now based at the UCSF/UC Hastings Consortium on law, science and health policy. Katheryn is recognized as a national leader in spearheading creative and effective efforts to promote improved care for people who are seriously ill and dying. And on this episode, Katheryn is discussing her passion for supporting and protecting people's right to a peaceful and dignified death. As well as her views on the current laws in place in certain states that allow terminally ill people to access physician aid in dying or otherwise known as death with dignity. I personally found this conversation to be highly informative, a bit provocative and incredibly interesting. I hope you do too. Well. Katheryn, I am so happy to have this conversation with you. And I really appreciate you taking time. I know you're a busy lady, and involved in lots of important things. So, again, thanks for sharing your time and your expertise with my listeners. Kathryn Tucker: Well, thank you for having me. My pleasure. Dr. Bob: Yeah. I feel like we have so many different things that we could talk about that are important, but I'd like to start out, you're a passionate advocate for people having the most peaceful, dignified end of life as am I. We have we approach it from different angles, but with the same kind of general mission, which is to allow people to be self-determining and have more control. You've been doing this for a long time, how did you become such a passionate advocate for this? Kathryn Tucker: I started doing this work when I was a brand new lawyer back in 1990, and I was the outside counsel to the first initiative campaign in the country to put before voters the question of whether dying patients should be able to receive physician assistants in dying. So, my work started that year with that campaign. I did become passionate about empowering patients with information and choices as a civil liberty, and one of the most profoundly personal decisions a person can make in a lifetime. Dr. Bob: So, was this something that you ... Is this a direction that you chose at that time back in 1990, or did it just fall into your purview based on where you were working and what you were doing? Kathryn Tucker: I was a young lawyer in a big law firm in Seattle, Perkins Cooley that supported its lawyers taking on pro bono work. So, I actually was casting about for some public interest work and came upon the campaign, Washington Citizens For Death With Dignity, and just volunteered to provide some legal support. Right at that moment, the initiative was being drafted. So, I got involved with that drafting. Then we had a long campaign that involved the defense of the ballot title in court, that's the words that the voters will see when they go to make their vote and is very important to the outcome of the vote. So, we had litigation about that. We had litigation around false political advertising because some of the claims that were being made about what the law would allow were so outrageously wrong that we challenged those in court. So, it turned out to be a year and a half working to get this in front of the voters. And it very nearly passed even though it was quite a broad measure, much broader than what was passed in Oregon a few years later. So, my work on that then rolled forward into doing some work on the Oregon Effort in 1994. But also the orchestrating of two federal lawsuits that were seeking to have the federal courts and ultimately the United States Supreme Court recognize that the choice of a dying patient for a more peaceful death with physician assistants was an interest that should be protected by provisions of the United States Constitution. So, that work then got underway, and 25 years later I'm still doing this role. Dr. Bob: You're still doing that. Do you ever wonder what would have happened if you never were asked to participate in that back in 1990- Kathryn Tucker: It would probably have been a less interesting and satisfying career. I think that this question which is that the intersection of law, medicine, bioethics is very fascinating, and there are so many perspectives and so many complexities that 25 years later it says interesting as it was when I first got started. So, I'm very grateful and privileged to be able to do this work.Dr. Bob: I completely get that. This work has been part of my life only for the past couple of years since the end of Life Option Act passed in California, but it's so complex, and it makes me feel so, I guess, alive and invigorated to be able to provide such a high level of support at such an incredible and vulnerable and intense time in people's lives. Kathryn Tucker: Right, absolutely. Dr. Bob: So, I commend you, and you're partly responsible for what's transpired and what's now allowing people to have this kind of control and peace. And so I thank you for all the efforts that you've put in. I know that you've gone way above and beyond, you've created a nonprofit to additionally provide support. So, 25 years after you began, what are you currently focusing your energy and attention on right now? Kathryn Tucker: Well, one of the things that I constantly try to do is have some perspective on whether the efforts that we have been engaging to expand end of life liberty are actually achieving that. My current view is that while the work we did with the Oregon Death With Dignity [inaudible 00:07:50] which became the first statute to permitted and dying, enacted by voter initiative in 1994 by the Oregon voters. But then subsequently followed in many other states that have essentially what's referred to as the Oregon model. Which is a very heavy-handed government regulation of the practice of medicine with regard to aid and dying. That very heavy-handed government regulation may have been appropriate and necessary in 1994 when no state had an open practice of aid and dying. And there were many unanswered questions about how an open practice would impact patients and the practice of medicine. So, the Oregon enactment was designed first to actually be able to run the gauntlet of the political process. So, it needed to have a tremendous number of what are referred to as safeguards. You'll recall that the Oregon measure followed a failed attempt in Washington State in '91, and then a failed attempt in California in '92. So, by the time we were working in Oregon in '94, it was the kitchen sink approach to protection, regulation and safeguard so that the contentions of opponents that this would be dangerous could be effectively combated by showing how many safeguards, in fact, were in place. So, that's the backdrop of why the Oregon measure has the multitude of restrictions, requirements, and constraints that it does. Following Oregon's enactment. Other states adopted virtually the same but in some cases even more burdensome measures. Because at that point they could say well, the Oregon approach has worked well. So, everyone in this forum can feel comfortable voting for this. That's been effective. We saw Washington State and Vermont and Colorado and California and Hawaii adopt what are called Oregon style aid in dying measures. The problem is we're now more than 20 years later; we've got abundant data that shows who chooses aid in dying and why, and how it impacts patients in the practice of medicine. So, we now know a lot more than we knew in the early '90s. I think it's time to move away from the Oregon model because what we have also seen, and a multitude of studies are starting to report is that very heavy-handed government regulation comes at a tremendous cost. It creates barriers to patient access, which I know you've seen in your practice. And it creates tremendous burdens for physicians, which of course you're also aware of, which means few doctors are willing, and patients find difficulty finding doctors, and it's very problematic. So, the advocacy that I am embarking into now is really to move the practice of aid in dying into a standard of care approach, which is how all of medicine is practiced Dr. Bob: Awesome. You are really gifted at articulating all of that, and I think you did a great job of sharing how things got to be as they are today. Could you go a little deeper into what the heavy-handed government regulations you're referring to are? Kathryn Tucker: Sure, and I know you know them very well. Dr. Bob: Right? I want our audience to be aware of what we're talking about. Kathryn Tucker: Right. Well, so, on the eligibility side, and I don't really quibble with this because I think this is where our culture accepts the practice of aided dying. The patient must be diagnosed with six months or less life expectancy. They must be mentally competent. So, this is a decision that can only be made by a patient who has the ability to make their own informed medical decisions. Then the physician involvement is limited to providing the prescription for medication which the patient can self-administer. Those three bright lines, terminal illness, mental competency and patient self-administration, I think are what this culture accepts and are appropriate however the practice is conducted. Whether it's subject to statute, or standard of care. But then beyond that, what these regulatory statutes require is a tremendous amount of process and procedure. The patient must make multiple requests. It must be oral and written; they must be witnessed. They must have a minimum 15-day waiting period, although in the case of Hawaii that's now been extended to a minimum waiting period of 20 days. There's a tremendous amount of requirement for the collection and recording of data. And all of that is apparent to the practice of medicine. And most medical practices, even practices that result in the death of the patient and in fact, can be anticipated to precipitate the death of the patient are practice subject to standard of care. Which means the practice and procedures that govern are those that have been shown to be most efficacious and to deliver the best care to the patient. That is something that can evolve over time as clinicians discover what is most efficacious. So, it's an evolving standard, which best serves the patient. Here, just to bring it into a concrete example, I think we can all see that a 15-day mandatory state regulated waiting period causes a tremendous amount of suffering that standard of care would likely not impose. Clinicians free to determine whether there should be a waiting period would likely have it be much shorter. They might say to the patient, and Dr. Bob, you can say what you might say. You might turn to your patient and say, "Why don't you sleep on this, and we'll talk about it at our visit next Tuesday, or we'll talk about it tomorrow on the phone." It wouldn't be an additional 15 days. Because remember, patients come to this choice when the cumulative burden of suffering is so horrific that they feel that achieving death is their best option. So, they're in tremendous suffering when they're ready to make that choice, and then mandating waiting another 15 days, which many patients don't even live long enough is just cruel. Dr. Bob: Agreed. I completely agree. So, that does seem to be the most significant burdensome aspect. It's interesting, I hear about how often people have these multiple struggles trying to find a physician who will support them. Once they do find somebody, often it's because they're part of a hospital system, and they've been referred to so and so, or their own doctor has finally agreed to. But they also have these processes in place that mandatorily referral to an ethics counselor or a psychologist or psychiatrist even though they've never had any hint of mental illness throughout their entire life. But when people find me, and I know there are other physicians, Lonny Shavelson, and there are other physicians who are truly focused on providing support and honoring the patient and not primarily focused on protecting themselves and worrying about the liability or the hassle factor. The process really can be very streamlined. It doesn't feel in many cases for the patients that we care for, overly burdensome aside from the 15-day waiting period. So, I know we've had conversations about that- Kathryn Tucker: You are to be commended for your willingness to put up with so much procedure. Because doctors are busy people, and to create additional burdens on the clinician as these statutes do, well beyond what would be done for example, with the provision of palliative sedation, of course, is another medical choice that patients can make, and physicians can provide. Where death is the certain outcome after some considerable period of time, while the patient essentially dehydrates to death without any of that paperwork, without any of that reporting of data. It just happens within normal medical practice, which I think is where most physicians are comfortable practicing. That's a difficult enough job as it is without layering a tremendous additional level of process procedure and second-guessing on top. Dr. Bob: Yeah. I'm in agreement. What I've come to discover since becoming willing to participate and support patients and families is, I have concerns about this becoming a more ... About having a lot more physicians support participating. I want patients to have easier access, and not struggle to find the support that they need. But knowing how much time and energy goes into providing that support, the questions the patients have, the families have, the multiple, multiple phone calls and emails and communications as this is moving forward, I'm very concerned that most physicians in a traditional practice don't have the mechanism or don't have the wherewithal to provide that support. So, we would certainly have to be able to address that. Because otherwise, people are going to be struggling not having the information they need, not having the support they need. What are your thoughts about a process that can be put in place to ensure that that's happening? Kathryn Tucker: Well, I certainly think that clinicians who are willing to expand their practice to include aid in dying are going to be those that are highly motivated to respect their patients autonomy and to want to make sure that the patient is able to make the journey to death in the manner that is most consistent with their very personal preferences and values and beliefs. So, this is a fairly unusual subset of clinicians that will feel strongly about that. I think that they will take the responsibility of ensuring that the patient's request is voluntary and considered and enduring. I think they will take that all very seriously in a standard of care practice. Those clinicians will provide it. So, it will self-select. Certainly, not everyone is going to make this part of their practice. And we know that, for example, 20% of surveyed physicians in a New England Journal of Medicine survey were unwilling to discuss palliative sedation with their patients. That's an option that is clearly accepted by both law and medicine, and it should be available to patients in all 50 states. Yet, a fifth of doctors don't inform their patients about it. So, we know that physicians self-select what they're willing to provide in terms of care, and not all physicians would provide aid in dying. I'd like to see the model that we've been able to open the door to in Montana, considered by other states. And that's the one state that now has nearly a decade of aid in dying practice subject to standard of care, not subject to statute. I think that that model should be more closely looked at by other states and by advocates. Because it's much more normal in the practice of medicine than to have statutory governance. Dr. Bob: Yeah, it's an interesting model. Do you know how ... Of course, Montana is not a very populous state. Is there any data on the numbers of patients that are taking advantage of that right in Montana? Kathryn Tucker: Right. Well, you asked the question that we all ask, and the answer is no. Which is as it should be, because, absent a statute, clinicians are not required to collect and report data to a state agency, which then publishes the data for public review. So, we don't know the answer to that question. We do know anecdotally, from talking to clinicians who have embraced aid in dying in their medical practice, that some clinicians are practicing, and some have been very public about that, and have been willing to talk about their experience in other forums, including in lawsuits, trying to expand and have life, liberty and other states. So, we have the experience and the testimony of participating clinicians, but we don't have survey information. And in fact, I've been working with some researchers who do research into the practice of aid in dying in various states and published studies that you'd probably read about that practice. To encourage them to embark into the kind of surveying that would allow us to answer that question in Montana. It's really, they're excited to do it, it's a question of finding the funding to support their work, and we are also planning a symposium in the state of Montana to bring forward the experience there, and hopefully interested clinicians and patients and health policy researchers from around the country will come to that symposium to learn more about the Montana experience. Dr. Bob: Great. Do you know when that's going to be happening? Kathryn Tucker: We have just chosen the date. It will be September 6, 2019. Dr. Bob: Okay, so about a year plus in the planning. Sounds good. I'll put that on my calendar. Kathryn Tucker: Great. Dr. Bob: Another model that I find interesting, we were talking about the concern about physicians, if more physicians were participating in supporting aid in dying, do they have the wherewithal to truly support the patients? I did an interview with Robert John Keir in the Netherlands, and we talked about the model there, which of course allows euthanasia, in a much broader scope. But they allowed physicians to serve as an attending physician without any specialized training or background. But every patient is required to be seen by a specialist in this infield. There's a select number of physicians who are trained to be able to do the assessment and to provide the guidance and support. So, they provide support for not only the patient but for the physicians who have the relationship with the patient. So, what it does, is it assures that every patient has the adequate support that they would need, which would be an interesting model to be looking at here as well. Because one of the reasons that physicians, many physicians are reluctant is because they were concerned about the burden. They're concerned about the time involvement that they don't know enough to make sure that they're doing everything properly. So, what are your thoughts about that? Kathryn Tucker: Yeah, I don't favor having an extremely specialized small cadre of physicians who do this work. I much favor that the patient can turn to their own physician in the context of hopefully, a long-standing doctor, patient relationship, which can be very rich in terms of what the doctor knows about this individual, and their values, their beliefs, their preferences, and that that can inform the care the physician is able to provide the patient. Rather than having the patient come into contact at a difficult, vulnerable, burdened time of life to meet a new professional, and try to ramp that person up in explaining who they are, and why this is important to them. That's a complex dialogue that one would hope has gone over some period of time. And I think that's why it's so difficult Of course, to extrapolate cross-culturally. But I think it accounts for when you take a look at the data from the Netherlands where it is common that there are these long-standing doctor-patient relationships. And that that then allows the clinician to feel comfortable actually administering life-ending medication to the patient, which is not permitted in the States. But when you're in a situation with a very long-standing relationship, and there's a lot of clarity and understanding about the patient's wishes, the clinician then feels comfortable doing that, and the society feels comfortable supporting it. So, I tend to favor the physician assistants coming from a position with a long-standing relationship with the patient. Dr. Bob: I couldn't agree more. I absolutely believe that that is the ideal version and the ideal scenario. But realistically, I'm also aware of what life is like for physicians, and what that relationship has become. And unfortunately, it would be a long time, which I think many things would have to change for that to become reality. And I think we're both aware of that. That's the idealized version, which would be phenomenal, and it does happen at times. There are times when I have a physician who will contact me and say, my patient is requesting this, I want to support them, I don't really know what to do. It's my first time, and they request my support in guiding them to allow them to be the attending physician, and I may become the consulting physician, but providing additional guidance and support. Kathryn Tucker: That's exactly as it seems it should be, which is that's how standard of care and best practices are established, is clinicians who are new to a practice will look to peers for guidance. That's the beauty of standard of care governance is, hopefully, the more experienced clinician helps the beginner understand what best practices are. And those can, in a normal environment be allowed to evolve as the clinicians learn in providing care. So, I think that's the direction we should be moving, and much of my work now is oriented toward bringing that about. Dr. Bob: That's wonderful. I'm fully supportive of that aspect. I'd like to ... Again, we could speak for hours and just barely scratch the surface of all the things that we might want to talk about. And I am hopeful that you'll be willing to come back and do another podcast with me at some point in the future. But before we close, I just want to give you an opportunity to share whatever it is that's bubbling up for you, if there's something that you want to make sure that you articulate to the listeners, I'd like to give you that opportunity. Kathryn Tucker: Well, I will close by thanking you for offering me this opportunity to share some insight into the work of the End Of Life Liberty Project. And for any listeners who don't know the work with that project, you can find out more by visiting our website, which I hope you will do. We are based out of the UCSF/UC Hastings Consortium on law, science and health policy. But if you just Google End Of Life Liberty Project, you'll come to our website where there's information about our work. There's also a handy donate button. Because of course, this work is the work of a nonprofit and can only happen when donors support the work. So, if any of your listeners are in a position to support this work, we're always grateful and make tremendous mileage out of every dollar donated. You can also like us on Facebook, and get updates on the work of the project through following us on Facebook. Dr. Bob: Fantastic. And we'll make sure that the links for the sites and the Facebook page are on the website where we post all the podcasts. And that's at integratedmdcare.com/newsite1. Again, this was fascinating. I'm always fascinated and grateful to speak with you. I feel like we are in partnership in something incredibly meaningful. The patients and families that we get to care for are benefiting from your tireless efforts. And again, thank you for giving us some of your time and wisdom. Kathryn Tucker: Thanks for the opportunity Bob, and for all of your good work as well. So, congratulations to you.

Kelly Johnson’s last days were his final act. He was a Bay Area musician, a dancer, a vaudeville act -- a performer for life. Johnson used the End of Life Option Act that has been legal in California since June 2016. The decision to end one's life has always been controversial. But not for Johnson who choreographed every last little detail to the end. Guest: Arash Malekzadeh, director of "A Dance With Death: The Final Days of Kelly Johnson"

When Brittany Maynard was diagnosed with a virulent brain tumor, she investigated what might help her and how the end would look if nothing helped. What she learned about how that end would likely unfold scared her more than anything. She searched for a way to stay in her home state of California and still experience a gentle, pain free death when the time came. But there was none. With the support of her husband, Dan Diaz, and the rest of her family, she made the wrenching decision to move to Oregon in the last months of her life so that she could take advantage of the Oregon Death With Dignity Act, which allows terminally ill people the option of ending their life with medication. After her death, Dan became a fierce advocate for the End of Life Option Act in California and similar acts across the country. Although the California act went into effect, it is under attack and has been suspended. How is Dan affected by the grueling process of trying to fulfill his promise to Brittany?

When Brittany Maynard was diagnosed with a virulent brain tumor, she investigated what might help her and how the end would look if nothing helped. What she learned about how that end would likely unfold scared her more than anything. She searched for a way to stay in her home state of California and still experience a gentle, pain free death when the time came. But there was none. With the support of her husband, Dan Diaz, and the rest of her family, she made the wrenching decision to move to Oregon in the last months of her life so that she could take advantage of the Oregon Death With Dignity Act, which allows terminally ill people the option of ending their life with medication. After her death, Dan became a fierce advocate for the End of Life Option Act in California and similar acts across the country. Although the California act went into effect, it is under attack and has been suspended. How is Dan affected by the grueling process of trying to fulfill his promise to Brittany?

Please Note:  This was recorded as a Facebook Live earlier this year prior to the recent ruling to overturn the California End of Life Options Act 2015 by Riverside County Superior Court Judge. In response, California Attorney General Xavier Becerra filed an emergency appeal seeking a stay of Superior Court Judge Daniel Ottolia's ruling that invalidated the less than two-year-old medical aid-in-dying law.  "It is important to note the ruling did not invalidate the law or the court would have said so explicitly in its order, so the law remains in effect until further notice," said John C. Kappos, a partner in the O'Melveny law firm representing Compassion & Choices. If this law and the right to die with dignity is important to you, we urge you to learn more from Compassion and Choices the organization that helped get the law passed.  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. Need more information? Contact Dr. Bob for a free consultation. Transcript Dr. Bob: On this episode, Elizabeth Semenova and I speak very frankly about what it's like to support people through Medical Aid and Dying. We explain the process; we discuss who asks for this kind of support and why there are still so many barriers. This was originally captured as a Facebook Live and repurposed as a podcast because this information is so vitally important. Please share the podcast with everyone and anyone you feel would benefit from listening. Thank you. Dr. Bob: I'm going to do a little bit of introduction for myself, if you're watching this and you have been on the integrated MD Care site, you probably know a bit about me. I've been a physician for 25/ 30 years, somewhere in that range. Over the past several years I've been focusing on providing care for people who are dealing with complex illnesses, the challenges of aging, the challenges of dying. During these few years, I've discovered a lot of gaps in the health care system that cause a lot of challenges for people. Dr. Bob: We developed a medical practice to try to address those big challenges in those big gaps that we've encountered. It's been really remarkable to be able to do medical care in a way that is truly sensitive to what people are really looking for and what their families are looking for that is not constrained and limited to what the medical system will allow. It's not constrained by what Medicare will pay, what insurance will pay. We allow people to access us completely and fully and we are there to support them in a very holistic way with medical physician care, nursing care, social working care and then a whole team of therapists. Massage therapists, music therapists, acupuncturists, nutritionists. Dr. Bob: So that has been really fascinating and phenomenal. Elizabeth came along in the last several months. Really, she was drawn primarily to the true end of life care that we deliver and has been truly surprised how beautifully we are able to care for people who aren't necessarily dying as well. Elizabeth: Absolutely, yeah. Dr. Bob: So we can talk about all the different aspects of that, but we are here today to really talk about Medical Aid and Dying. Because, shortly after we started this practice, back in January 2016 California became one of the few states in the United States that does allow physician-assisted death. Dr. Bob: It allows what is also known as Death with Dignity, Medical Aid in Dying. The California End of Life Option Act passed in June 2016. At that point, a person with a terminal illness, an adult who is competent, had the ability to request a prescription of medicine from their physician, from a physician. That if taken, would allow them to have a very peaceful, dignified death at a place and time of their choosing. Since June 2016 we have become essentially experts and kind of the go-to team in San Diego for sure and actually throughout a good portion of Southern California because other physicians are reluctant to participate or because the systems that the patients are in make it very difficult or impossible for them to take advantage of this law. There is a lot of confusion about it. It's a very complex, emotionally charged issue. We as a team, Elizabeth and I, along with other members of our team have taken it upon ourselves to become true experts and guides so that people can get taken care of in a way that is most meaningful and sensitive. In a way that allows them to be in control and determine the course of their life leading up to their death and how they are going to die. That's why we are here. We want to educate; we want to inform, we want people to not be afraid of the unknowns. We want to dispel the myths. I'm passionate about that. We work together, and I think we do a very good job as a team, of supporting patients and families. I'd like to have Elizabeth share a little about why this is so important to her and then we are going to get into some more of the specifics about what's actually taking place, the requirements, how the process works and if there are questions people have we are going to answer those as well. We are going to go for about 20/ 25 minutes, and if it turns out that we don't get through enough of our material then we will have another session, but we don't want to make this too long. We want to make it concise, meaningful and impactful. Elizabeth: Okay. Dr. Bob: All right. Elizabeth: Okay. I started as a hospice social worker, and I became an advocate for Aid and Dying because I learned about the law. Learned that there were not a lot of options, policies, procedures in place, in Southern California when I started working in hospice for people to take advantage of and participate in the End of Life Option Act. Elizabeth: There were very, very, very few resources. There were no phone numbers to call of people who would answer questions. There were no experts who, well not no experts, who thoroughly understood the law but it was very hard to access that information. Elizabeth: I did my best to find it and became connected with some groups and some individuals who were experienced with and understood the law and became really passionate about pursuing advocacy and allowing as many people to have access to that information as possible. I started working on sharing that information and being a resource and learning everything that I could so that other people could have that. How I became connected with Integrated MD care and with you, I found you as a resource for another client, and we started having conversations, and I learned that it was possible to be supportive of people through this process through the work you were doing and I took the opportunity to become a part of it. We have done a lot to support a lot of people, and it's become a really special part of our work and my life. Dr. Bob: Why is it so important to you? Why is it so important to you for people to have access and the information? Elizabeth: I really believe that every life can only be best lived if you know all of the options that you have available to you. So how can you make choices without information? Right? So when it comes to something like this which is a life and death situation, quite literally, there are limited resources for people to make informed choices. What could possibly be more important than having access to information about what your legal rights are to how you live and die? With California only having begun this process of Aid and Dying. Exploring different perspectives and legal options and philosophical positions on the subject, I think it's really important to open that conversation and to allow people who support it as well as people who are against it to have those conversations and to explore how they feel about it and why. Then of course for the people who want to participate, who want information, resources, support in the process they have every legal right to it, in my opinion, they have every moral right to it and if there are no other people who are willing to support them I feel it is my duty to do that. Dr. Bob: Awesome. And you do it well. Elizabeth: Thank you. Dr. Bob: Yeah it's kind of crazy to think we have this legal process in place. People have spoken up and said, we want to have access to this, and we believe it's the right thing. Despite the fact that we have a law in place that allows it, it was so difficult, and it's still is to some degree, but especially in the beginning, it was like a vast wasteland. If somebody wanted to find out how to access this process, no one could really give them adequate information. There were organizations that would tell them what the process is and how it happens but there was no one stepping up to say 'I'll support you.' There were no physicians, and there was no one who was willing to give the name of a physician who was willing. It was very frustrating in the beginning of this process, in the first, I would say, the first year and a half. Still, to some degree, getting the right information, getting put in touch with those who will support it is difficult or impossible. Even some of the hospital systems that do support Medical Aid and Dying their process is very laborious, and there are so many steps that people have to go through that in many cases they can't get through it all. Our practice we are filling a need. Our whole purpose in being is to fill the gaps in health care that cause people to struggle. One of my mantras is 'Death is inevitable, suffering is not.' Right. We are all going to die, but death does not have to be terribly painful or a struggle. It can be a beautiful, peaceful, transformative process. We've been involved in enough End of Life scenarios that I can say that with great confidence that given the right approach, the right information, the right guidance, the right support it can always be a comfortable and essentially beautiful process. Elizabeth: Something that is important too also is to have people who have experience with these processes these struggles that people have. Not just anyone can make it an easy process. Not just anyone can make it a smooth process. You have to have it those obstacles you have experienced what the difficulties are and where the glitches are and in order to be able to fill those gaps you have to know where they are. Dr. Bob: Right. Elizabeth: Sometimes that comes from just falling into the hole and climbing out which is something we have experienced a few times. Dr. Bob: Having been through it enough times to... and of course we will come across- Elizabeth: More... Dr. Bob: Additional obstacles but we'll help...and that doesn't just apply to the Medical Aid and Dying it applies to every aspect of health care, which of course, becomes more complex and treacherous as people's health becomes more complicated and their conditions become more dire, and their needs increase. Hospice, yes it's a wonderful concept, and it's a wonderful benefit, but in many cases, it's not enough. Palliative Care, in theory, great concept, we need more Palliative Care physicians and teams and that kind of an approach, but in many cases, it's not enough. What we are trying to do is figure out how to be enough. How people can get enough in every scenario. We are specifically here talking about Medical Aid and Dying. In California, the actual law is called The End of Life Option Act. It was actually signed into law by Governor Brown in October 2015, and it became effective June 9th, 2016. I'll note that just yesterday the Governor of Hawaii signed the bill to make Medical Aid and Dying legal in Hawaii. The actual process will begin January 1st, 2019. There is a period of time, like there was in California, a waiting period, while they're getting all the processes in place and the legal issues dealt with. Elizabeth: Which you would think, that would be the time frame that health care intuitions would establish policies, would determine what they were going to do and how they were going to help. Dr. Bob: One would think. Elizabeth: You would think. Dr. Bob: Didn't happen here. Elizabeth: That didn't happen here. Dr. Bob: So maybe Hawaii will learn from what happened in California recently when all of a sudden June 9th comes, and still nobody knows what to do. What we are becoming actually, is a resource for people throughout California. Because we have been through this so many times now and we have such experience, we know where the obstacles are, we know where this landscape can be a bit treacherous. But, if you understand how to navigate it doesn't have to be. Elizabeth: We have become a resource not just for individuals who are interested in participating or who want to find out if they qualify but for other healthcare institutions who are trying to figure out how best to support their patients and their loved ones. TO give them without the experience that they need without having the experience of knowing what this looks like. Dr. Bob: Yup. Training hospice agencies. Training medical groups. At the heart of it, we just want to make sure that people get what they deserve, what they need and what they deserve and what is their legal right. If we know that there is somebody who can have an easier more supported, more peaceful death, we understand how incredibly valuable that is, not just for the patient but for the family. For the loved ones that are going to go on. So let's get into some of the meat of this. I'm going to ask you; we can kind of trade-off. Elizabeth: Okay. Dr. Bob: I'll ask you a question. Elizabeth: Okay. Dr. Bob: You ask me a question. Elizabeth: Okay. Dr. Bob: All right. If you don't know the answer, I'd be very surprised. In general who requests General Aid and Dying? Elizabeth: A lot of the calls we get are from people who qualify. So I don't know if you wanna go over the qualifications... Dr. Bob: We will. Elizabeth: Okay. Dr. Bob: That's the next question. Who is eligible. Elizabeth: Sorry. A lot of the people who call are individuals who are looking to see if they qualify and want to know what the process is. There are people who are family members of ill and struggling individuals, who wanna support them in getting the resources they might need. There are some people who just want the information. There are some people who desperately need immediate support and attention. Dr. Bob: Do you find, cause you get a lot of these calls initially, do you find that it's more often the patient looking for the information or is it usually a family member? Elizabeth: It's 50/50. Dr. Bob: Oh 50/50. Elizabeth: I think it depends a lot on where the patient is in the process and how supportive the family members are. Some people have extremely supportive family members who are willing to make all the phone calls and find all the resources and put in all the legwork. Some people don't, and they end up on their own trying to figure out what to do and how to do it. There are some people who are too sick to put in the energy to make 15 phone calls and talk to 15 different doctor's offices to find out what the process is. A lot of people start looking for information and hit wall, after wall, after wall. They don't even get to have a conversation about what this could look like, much less find someone who is willing to support them in it. Dr. Bob: Great, thank you. So who is eligible? Who does this law apply to? That's pretty straightforward, at least in appearance. An adult 18 or older. A resident of California. Who is competent to make decisions. Has a terminal illness. Is able to request, from an attending physician, the medication that if taken, will end their life. Pretty much 100% of the time. The individual has to make two requests, face to face with the attending physician and those requests need to be at least 15 days apart. If somebody makes an initial request to meet and I determine that they are a resident of California, they are an adult, they are competent, and they have a medical condition that is deemed terminal (I'll talk more about what that means) if I see them on the 1st, the 2nd request can happen on the 16th. It can't happen any sooner. The law requires a 15 day waiting period. That can be a challenge for some people, and we will talk a bit about that as well. In addition to the two requests of the attending physician, the person needs to have a consulting physician who concurs that they have a terminal illness and that they are competent to make decisions and the consulting physician meets with them, makes a determination and signs a form. The patient also signs a written request form that is essentially a written version of the verbal request and they sign that and have two people witness it. That's the process. Once that's completed, the attending physician can submit a prescription if the patient requests it at that time to the pharmacy. Certain pharmacies are willing to provide these medications, and many aren't. But, the physician submits the prescription to the pharmacy, and when the patient wants to have the prescription filled, they request that the pharmacy fill it and the pharmacy will make arrangements to have it delivered to the patient. The prescription can stay at the pharmacy for a period of time without getting filled, or it can be filled and be brought to the patient, and at that point, the patient can choose to take it or not. The patient needs to be able to ingest it on their own. They have to be able to drink the medication, it's mixed into a liquid form. They need to be able to drink five to six ounces of liquid, and it can be through a glass or through a straw. If the patient can't swallow, but they have a tube-like either a gastric tube or a feeding tube as long as they can push the medication through the tube, then they are eligible. The law states that no one can forcibly make the patient take it. They have to be doing it on their own volition, willingly. Okay. So, that's pretty much the process. Is there anything that I left out? What is a terminal illness? That is a question that is often asked. For this purpose, a terminal illness is a condition that is likely or will likely end that person's life in six months if the condition runs its natural course. Most of the patients that we see requesting Medical Aid and Dying have cancer. They have cancer that is considered terminal. Meaning there is no cure any longer. It's either metastasized, or it involves structures that are so critical that will cure them. In most cases, there is no treatment that will allow them to live with a meaningful quality of life, past six months. Of course, it's difficult to say to the day, when somebody is going to die, but there has to be a reasonable expectation that condition can end their life within six months. We also see a number of people with ALS, Lou Gehrig's disease, amyotrophic lateral sclerosis. That's a particularly sensitive scenario because those people lose their ability to function, they lose their motor function, and as it gets progressively, further along, they lose their ability to swallow. They can lose their ability to speak and breathe. The time frame of that condition can be highly variable. We see people with advanced heart disease, congestive heart failure, advanced lung disease other neurologic diseases. Elizabeth: The gamut. Dr. Bob: We see the gamut, but those are the majority. We've talked about who's requesting this for the most part, who's eligible? A patient who is competent has a terminal diagnosis and is an adult resident of California. We talked about the requirements, what's the process. Let's talk a little bit about the challenges that we've identified or that other people have identified. At the very beginning of this process, I became aware that the law was going to begin taking effect just a few months after I started my medical practice at Integrated MD Care and I figured great this is progressive. We are kind of like Oregon, we are going to have this option available, and I felt like it was the right thing. I've always felt like people should have more control and be able to be more self-determining. Especially at end of life. Who's life is it? Right? Who are we to tell somebody that they have to stay alive longer than they want to. That never made sense to me. I think if you're not in this world of caring for people at end of life or you haven't had an experience with your family. Most people figure when people are dying they get taken care of adequately. Hospice comes in, and they take care of things. IN some cases that's true. In many cases, it is the furthest thing from the truth. People struggle and suffer. Patients struggle and suffer, families suffer and if we have another option, if we have other options available wouldn't we be giving them credence? My answer is yes, we should. So when the law was coming into effect, I figured physicians would be willing to support patients because it's the right thing. I just assumed people would go to their doctors and say 'we now have this law, can you help me' and the doctors would say 'of course.' It didn't quite work out that way. Now I understand why I see it more clearly. People started calling me to ask for my support, and I started meeting with them and learning about what they were going through and learning about all of the struggles they've had through their illness and trying to get support with what is now their legal right and they were getting turned away by doctor, after doctor, after doctor. I learned what I needed to learn about the process and I started supporting a few patients here and there. As time went on, I saw A)what an incredibly beautiful, beautiful process it is. What an extraordinary peaceful end of life we could help people achieve and the impact that it has on the families was so incredibly profound that I know that this was something that I needed to continue supporting. With the hope that other physicians would come on board and there wouldn't be such a wasteland and so much struggle because I can only take care of some many people. Well, it's a year and a half later, and I do think things have- Elizabeth: Improved. Improved some. Some of the hospital systems in San Diego certainly, have developed policies and process to support patients through the Aid and Dying, sometimes it can still be laborious and cumbersome, and hiccups occur that create great challenges and struggles. But what we've developed is a process that is so streamlined. Like Elizabeth mentions, we've come across so many of these obstacles and these issues that couldn't have really been anticipated. That have to do with hospice agencies not wanting to be supportive. Of not being able o find a consulting physician for various reasons. Coroners and medical examiners not understanding anything about this process. So we've had to be educating them to make sure that the police don't show up at somebodies house in the middle of the night. It's become a real passion for both of us and our whole team. To be able to do this and to be able to do this really well, as well as it could possibly be done. More doctors are coming on board and being open to this. I'll tell yeah, I'm not so sure that's the right thing, and we have thoughts about that. I've been talking a lot, so I wanna sit back and let you talk, take a sip of my coffee and I wanna hear your thoughts on- Elizabeth: Other doctors. Dr. Bob: Other doctors and how they perceive this. Why we may not just want every doctor- Elizabeth: Doing it. Dr. Bob: Doing it. Elizabeth: I think it's really important that other doctors be open to it. Especially open to the conversations. I think one of the things that has been the most important for me is to help people start those conversations with their doctors, with their families, with other healthcare providers. A lot of the doctors are restricted by policies where they work or by moral objections or just by not really being familiar and being concerned that they might misstep. I think that having doctors come on board first in terms of conversations is fantastic. Then also learning the process is important. As simple as it is in the way that you described it it's more complex than that. There are a lot of small details, paperwork, and requirements. Things have to be done a certain way in order to be compliant with the law. There are aspects of supporting the family. This is a very unique experience. If you as a physician don't have time to have longer conversations with patients and families, if you don't have time to provide anticipatory support and relief for the grieving process or for the dying process, it can be a struggle for the patients and families to go through this even if they have the legal support that they need. I think that that's one of the things you were referring to in terms of why it's not necessarily good for everybody to come on board. Dr. Bob: Yeah. Because if they say that they will support a patient and be their attending physician through this process, they could start the process and then come across some of these hurdles that they don't know what to do with and it could completely derail the process. It's too critical when patients finally feel that they now have this option available to them, that they see the light at the end of the tunnel, every little misstep and every little delay, is- Elizabeth: Excruciating. Dr. Bob: Excruciating. We see that happening over and over again. So when people find us and we assure them, we will help you get through this without any more hiccups, without anything getting derailed, they are very cynical. We tell them- Elizabeth: They've been so many doctors, they've been to doctors who've said... Dr. Bob: They've been screwed, they've... Elizabeth: We will help you, and they haven't gotten the help that they need. Dr. Bob: There is nothing that's more painful for somebody, an individual or a family member who's finally come around to wanting to support mom or dad or husband or a wife or a child and then to have it be taken away from them or threatened. We make ourselves available. There are times when we say we are available for you anytime, day or night; you can contact us. They start calling us; I've gotten calls at 2 in the morning from somebody just to say I just wanted to make sure you were really there. That you really would respond. They can't wait to get to the endpoint. Not even because they are ready to take the medication but because they are ready to have the peace of mind and the security of knowing that they have an easy out, rather than have to struggle to the bitter end. Elizabeth: This is really about empowering the patient and the family. This is all about providing them with the opportunity to do what they want to do with their life. To live it the way they want to live it and to end it the way they want to end it. Not in a way that is incongruent with their moral, ethical, spiritual life choices. In a way that supports the way that they've lived, the principals they've lived by and the things that matter to them. I would also say that the difficulties that doctors have had and the struggles that we've had in working with other physicians it's not because they don't care about their patients. It's not because they don't want the best thing for them. Maybe they disagree with what the best thing is, or maybe they feel that they are not able to provide sufficient support. There are a lot of really good doctors who aren't able, for whatever reason, to do this. Dr. Bob: That's a great point. I think a part of it is that sometimes they work for organizations that won't allow them to, and that happens often. Then they don't understand the process; they are intimidated by it. They don't want to mess it up. And, they are so busy that they feel like it's going to require too much time out of their day. Elizabeth: Which it does. Dr. Bob: Which it can, and they don't have any way to bill for that. They feel like they are going to be doing everybody a disservice. But unfortunately, that often leads to the patients being in this state of limbo and not knowing where to turn. Elizabeth: Thinking that they maybe they have started in the process and Dr. Bob: Not, we have certainly seen that. Elizabeth: Discovering later that they haven't. Dr. Bob: So we are going to close it down here shortly. One of the things, and you spoke about empowerment, and how really important that is, both for the patients and for the families. One thing that I've recognized, so now I've assessed and supported well over a hundred patients through this process. I've been with many of these people when they've taken the medication and died. So, I've seen how beautiful and peaceful it is. It literally in most cases, a lot of times there's laughter and just a feeling of incredible love and connection that occurs with the patient and the family in the moments leading up to that. Even after they have ingest the medication we have people who are expressing such deep gratitude and love and even laughing during the time because they are getting freed. They are not afraid, they are almost rushing towards this because it's going to free them. Most of the time they fall asleep within a matter of minutes and die peacefully within 20 to 30 minutes. Sometimes sooner. Occasionally a bit longer. But, if anyone is wondering if there is struggle or pain or flopping around in the death throws. None of that. This is truly...this is how I want to go when it's my time. The one thing that seems very consistent with the patients that I've care for through this process is, they have a physical condition that is ravaging their bodies. Their bodies are decaying, they are declining, they are not functioning. Their bodies are no longer serving them. But their spirit, is still strong. They have to be competent to be able to make this decision. Most of the time they are so determined to be in control of what happens to them, their spirit has always been strong. They have lost control because their bodies no longer function and that is irreconcilable for them. They cannot reconcile this strong spirit in a body that is no longer serving them and that is only going to continue getting worse. That's the other important part of this. These are people who are dying, they are not taking this medication because they are tired of living. They are taking this medication because they are dying and they don't see any reason to allow their death to be more prolonged and more painful, than it needs to be. They are empowered, and we are empowering people to live fully until their last moments and to die peacefully. My last little note here is, why do we do this? Well, that's why we do this. Elizabeth: Yeah. Dr. Bob: Because people deserve the absolute best most peaceful, most loving, death. This is in many cases, the only way to achieve that. I think we are going kinda wrap it up. We obviously are passionate about this topic. We are passionate about wanting to share the realities of it. We don't want there to be confusion, misconceptions, misunderstandings. Aid and Dying is here; it's not going away. It's going to continue to expand throughout our country. We are going to get to a place where everybody has the right to determine when their life should end peacefully when they're dying. I'm very happy and proud to be on the forefront of this. I know it's controversial, I imagine there are people who think that I'm evil and I'm okay with that because I know. I see the gratitude that we get from so many patients and families. When we go out and speak to groups about this the vast majority of people are so supportive and Elizabeth: Sort of relieved, even the professionals are so relieved. We have a patient, we have been helping another doctor support that patient, and he's so relieved and so friendly and so grateful just to be able to provide the support that he wouldn't otherwise be able to provide. It's not just the patients; it's everybody we engage on this, it's really amazing. Dr. Bob: Thank you. It really is an honor to watch you engage with the patients and families and to be as supportive of what we're doing. It's remarkable. Elizabeth: Thank you. Dr. Bob: We will talk about some of the options that people have when they don't qualify for Aid and Dying because there are other options. We wanted to address some of those options as well but not on this live; we'll do that maybe next time. Thanks for tuning in, have an awesome day, and we will see you soon, take care. Photo Credit:  CENTERS FOR DISEASE CONTROL AND PREVENTION/WIKIMEDIA COMMONS PUBLIC DOMAIN  

With us for this podcast is Attorney for Compassion and Choices ( the organization that fought to pass the bill), Jonathan Patterson. California’s End of Life Option Act was signed into law in 2015 by Governor Jerry Brown. The law allows doctors to prescribe lethal drugs to patients with six months or less to live. Hundreds of Californians have already taken advantage of that option, including 111 individuals who died from taking the drugs in the first seven months of their availability. Sadly a few days ago, a Riverside County Superior Court judge granted a motion by opponents of the California End of Life Option Act to invalidate the law. Unless the state successfully appeals the ruling in the next five days, eligible California residents will be prevented from utilizing medical aid in dying to peacefully end unbearable suffering.

Cantore talks to Dr. Bob Uslander, Medical Director and founder of Integrated MD Care of Del Mar.  Dr. Bob (as his patients refer to him) is one of only a handful of physicians that offers "Aid In Dying" services. Since June 9, 2016, California's End of Life Option Act has made it easier for people with terminal illnesses to choose when they want to die, but, needless to say, it remains a controversial subject for many families, friends and medical providers. That being said, Dr. Bob's primary goal is to make people more comfortable with the concept of dying.See omnystudio.com/listener for privacy information.See omnystudio.com/listener for privacy information.

Cantore talks to Dr. Bob Uslander, Medical Director and founder of Integrated MD Care of Del Mar.  Dr. Bob (as his patients refer to him) is one of only a handful of physicians that offers "Aid In Dying" services. Since June 9, 2016, California’s End of Life Option Act has made it easier for people with terminal illnesses to choose when they want to die, but, needless to say, it remains a controversial subject for many families, friends and medical providers. That being said, Dr. Bob's primary goal is to make people more comfortable with the concept of dying.

Hemlock Society San Diego (619) 233-4418 In this episode, Faye Girsh talks about the Right To Die and why she continues to support the movement.     Faye was the President of the Hemlock Society USA from 1996-2002 and Senior Vice President of End-of-Life Choices (Hemlock's temporary name) from 2002-2004. She had served on Hemlock's national board and essentially succeeded its founder, Derek Humphry. While President of the Hemlock Society she started the Caring Friends program, in 1998, which provided free, personal information and bedside support to Hemlock members considering a hastened death. For the last 25 years, she has appeared in debates and speeches all over the U.S. and has been on national TV and radio, including Court TV, Good Morning America, and Nightline. She was a speaker at the World Federation Conference in Melbourne, Toronto, Tokyo, and Amsterdam and has spoken at law schools, medical schools, civic groups, universities, and to many other audiences in this country, Great Britain, Canada, New Zealand and Australia. Transcript Dr. Bob: Well, hello and welcome to another episode of A Life and Death Conversation. I'm Dr. Bob Uslander, the founder of Integrated MD Care and the host of this series of podcasts. I have a very special guest with me today. All of my guests are special in some way or another, but Faye Girsh is a phenomenal woman. She is truly a ... I don't know. Some people I've heard to describe her as a marvel and an inspiration, so I'm thrilled to introduce you to my dear friend and co-conspirator, Faye Girsh. Faye Girsh: Hello, Bob. If you're looking for a wonder woman, I'm not it, but I'm very happy to expound on our mutually interesting subject. Dr. Bob: Fantastic. And many people would argue that point and would call you a wonder woman, because you've had a fascinating life, and I know a very interesting career, and the things that you've devoted yourself to and committed yourself to are of great importance to many of the people who are listening, because this is a life and death conversation and to me, you have really lived a very inspiring life, and you never shy away from the conversation about death. And you're somebody who has really devoted herself to helping others have the best possible experience of life and as well the best possible experience of death. Faye Girsh: Thank you for all that. Dr. Bob: And thank you for all that you've done, because what I get to do in my career, some of what gives my life and my career a great meaning is a direct result of the work that you've done over the years. Faye Girsh: It's very encouraging now that there are so many people working on this very important issue for all of us. Dr. Bob: And the issue that you're referring to it's called by lots of different things. When you're talking to somebody about what it is that you do and what you've devoted so much of your life to, what are the words that you like to use to describe it? Faye Girsh: I guess choices at the end of life, if I have less than 30 seconds, that people should be able to die the way they want to, in a humane and peaceful way, with their friends and loved ones present, and consistent with their own values and beliefs. That's the 45-second version. Dr. Bob: Actually, I think it was probably closer to 20 seconds, and it's- Faye Girsh: 20 seconds, okay. Dr. Bob: ... very descriptive and appropriate, I think. Faye Girsh: It sounds very simple too, and it's definitely not simple. In fact, the progress towards it is absolutely glacial because many people don't believe that we should have a choice in how we die, which to me is amazing and also very unjust, unfair. Dr. Bob: Yeah. I agree. And you can spend a lot of time exploring how we got here, and I'm sure there's some value in that because it helps those of us who really do believe that people deserve to have that choice in how, where and when they die. It helps us to see where the challenges remain, by looking at the barriers and the things that have been blocking that- Faye Girsh: You know, I'm reading an interesting book now, Bob, called Modern Death. I don't know if you've seen it. By a Pakistani American doctor named Haider Warraich.  I don't know how you pronounce his name exactly. But he talks about how the way we die has changed so much in the last 50 years because of technology, insurance, hospital, everything. It explains a lot to me about how things have changed from when I was a kid, and the doctor would make house calls, and I assume that if we were dying, he would have given us a nice injection and sent us on our way, with the agreement of the family, but it's a long way from that now. It's a little bit back to what you do when you visit people at their homes, which is so unusual these days. Dr. Bob: That does sound like an interesting book, and I'd like to make sure that the listeners have the resources that our very experienced guests are recommending. So "Modern Death" is the name of that book? Faye Girsh: Yeah. Dr. Bob: I'm going to pick up a copy. I appreciate that. Faye Girsh: Subtitled "How Medicine Changed the End of Life". Very interesting. I haven't finished it yet. I don't think he is necessarily a proponent of medically assisted dying, but he certainly leads up to where it should happen. Because I do think that probably 40 years ago, your GP – there weren't specialties then – your GP would come to your house and if you and your family decided that your suffering was unbearable, something in his black bag would help you through to the other side, just to use all these euphemisms. But that's changed, and the laws have changed. The laws are changing for the better for sure, as far as giving you more choice at the end of life, but it becomes very legalistic and formalistic. And maybe that's good because now there are safeguards, but when men safeguard, they're another man's obstacles. It has become cumbersome and complicated sometimes for people to have a peaceful death. Dr. Bob: Well, it seems like it used to be a pact between the doctor and the patient and family. We didn't need all the legislation; people trusted that their physician was going to be there and help them make those difficult decisions knowing it was time. We also didn't have all the other options available. We didn't have all the intensive care units with all of the life-prolonging technology. We didn't have skilled nursing facilities, where people could be housed for months or years- Faye Girsh: Well, actually we didn't even live that long. We didn't live long enough to have a prolonged and agonizing death. We didn't die of these degenerative diseases that we have now. So, yeah. I mean, this book explains a lot of that, but this is something that we've sort of accustomed ourselves to over the years, ways to keep people alive. Faye: I live in a retirement community. I'm 84, and it's getting close myself, and it's very interesting for me to see people, my friends, get old, get disabled, wind up in the care center, or the memory unit at worst, and die quietly.   We really don't know how the end comes for most people unless they are very close friends. And then we get a little picture frame, and a white rose in the mail room and says we died. No telling how we died, or what we went through before we died. And then a little obituary says he died peacefully in his sleep, which is usually a lie. And then a little tombstone says, "Rest in peace," but before that, sometimes there is no peace, and sometimes these steps to getting dead are very difficult. Dr. Bob: Yeah, as I'm aware of through my own experience and career. That's an interesting ... it's really fascinating to think about that, living in these communities, many of which are very nice, right? They're beautiful. They're like luxury hotels or cruise ships. Faye Girsh: They are. Right. Dr. Bob: And then there are all these folks who come to the dining room, or you see them in the common areas, and at the activities, and then you just don't see them anymore. Faye Girsh: That does happen. Or you see them on walkers, and then in wheelchairs, and then you don't see them. Or if they're your neighbors, they move to the care center, which we have a very nice arrangement. And then the next thing, sometimes as you know, is their little picture and white rose are up there in the mail room. It's fine. It's a good way to experience death. We don't talk about it very much here, but I've appreciated knowing that, because in my life I wasn't among people who were dying, but now, that's what happens. And what I hope is that people can die the way they want to. And I know you spend time here too and you know the people who live here. They accomplished a lot. We say our motto in Hemlock Society is, "Good life, good death," which we actually stole from Christian Bernard, I think, who wrote a book. The heart transplant doctor wrote a book, I think, called Good Life Good Death. And many of us here have lived a very good life, but we often don't have a good death... I've only been here four years ... but who went out to [inaudible 00:10:00] parking lot and shot himself because he had early dementia. And other people who've struggled with dementia then wind up in the memory unit here for years. In fact, we're having a situation now with my very good friend, whose wife has been there I think now eight years. And they have treated her without consulting the family, but now the family has put their foot down, absolutely no treatment. So she gets nothing. No vitamins or anything. And she's never been healthier. And finally, the family's decision to withhold food and hydration. And of all the things that have happened, is the caregiver has protested and said she would sue the institution here for murder. So, that's a very interesting development. Dr. Bob: I wasn't aware that was happening. Faye Girsh: Well, if I were at lunch now, which I usually would be, I would be talking to this man whose wife it is and trying to enlist one of his children to speak at one of our Hemlock meetings on this subject, which is the refusal of treatment in dementia. A very complicated subject, because a demented person can't speak for herself or himself, but the loved ones can, the person who's been appointed as health care agent can. But often those wishes are violated. I will have another speaker at our January meeting, whose mother-in-law has been in the institution. Those who know Bonnie, was once a very active, beautiful, intelligent woman, and they had been coerced, shamed I guess is the word, into providing treatment for her twice, because she has to have her hip fixed because she fell. She has to have her ulcer treated. Even though she knows nothing it is has made an advance [inaudible 00:12:18]. She doesn't want treatment. So these things are very complicated, refusing treatment, medically futile treatment that's given so often. And hospice is not saying that they can fix everything, but really they can. They can fix a lot of the pain even, but alone the existential suffering that people have because they can't do what they are used to doing, they don't want to be doped up at the end to alleviate the pain. They want a peaceful way out, and yet they either don't know what's available to them, or they can't find a doctor who will help them use even our California law, The End of Life Option Act. So we have a long way to go. We are about to finish our 30th year as Hemlock Society of San Diego, and we're looking for new directions to go in. And for me, dementia is the direction because it seems so hopeless to be a long-time demented patient with no way out. Dr. Bob: That is just ludicrous, to think about that when there are so many people, there are so many people who, as you say, lived wonderful lives, they raised children, they had careers, they contributed, and if they were able to look at the scenario and to see what's happened to them and what's being done, and you ask them what they would want, we know that they would want to not be there. Faye Girsh: That right. Dr. Bob: They would be ready to ask somebody to mercifully end their lives. And I'm a physician, and I know that there are laws that prohibit that, and we can't just take it upon ourselves. And even if people have indicated that they would never want to be alive in those circumstances, our hands are tied. But it's just a crazy, crazy situation- Faye Girsh: Fortunately, we can look North and see what Canada is doing. And Canada is making much more progress than we are, which is not surprising of course. But the Canadian law that went into effect the same time the California law went into, that is June 2016, permits active euthanasia. That is a patient can ask for a lethal injection. It's so much better than what we have to struggle with, these expensive bad-tasting drugs that you have to be able to swallow, to use. That's not such a good solution.  And also, Canadians have made their laws much more liberal. That is, it doesn't just take a doctor to do it. A nurse practitioner can help you die that way. And in our law in California, you have to have a psychologist or psychiatrist to ascertain that you are mentally competent, and another doctor to determine that you are terminal, in addition to the first doctor. But in Canada, that's not the case. A lot of different people can ascertain that you're mentally competent. And again, it doesn't have to be a doctor to provide the lethal injection. And the criteria is not a terminal illness as ours is, which to me, it is not even relevant to the question of how much you're suffering, and how long you've been suffering, and how long you have got to suffer. A terminal illness means you're going to die within six months, which in some cases is a mercy, but some of these neurodegenerative diseases take years of suffering before death occurs. So, I think we have to look to Canada to change our laws. And we've had the Oregon-type model as our model law now in six jurisdictions, five states in the district of Columbia, but that law has existed now for 20 years. To me, it's inadequate, and it's time to move forward and to look at what other countries are doing.  And then, there's a whole collection of ... No, that's not true. There are some doctors and some organizations, and I'm thinking in particular of Doctor Philip Nitschke, who started in Australia and was the first doctor in the world to give somebody euthanasia at their request, under a law. And that was back in 1996. He's now living in Holland, but he doesn't believe that we should try to change the law at all. He believes that people should be able to do it yourself, get what's necessary, whether it's drugs or mechanical devices or whatever, and do it ourselves because he knows that doctors are resistant to doing this and the law is very slow to change. That's one point of view. I don't totally agree with it. I think it's very helpful to have somebody there, somebody with an organization like Final Exit Network, to be there with you, and certainly a doctor to be there with you if you can find a cooperative doctor like Doctor Bob Uslander to see you through this, because it's not just a one moment decision, you swallow something and you're dead. It's a decision that should be decided over months with consultation with your loved ones. But that is very difficult and complicated in our country. Dr. Bob: All of this is complicated for sure, so I appreciate you sharing your passion, and your viewpoints on this. If it's okay, I want to make one slight correction to one of the things that you indicated, about the process for the End of Life Option Act in California, in that it doesn't actually require a psychiatrist or a mental health specialist to weigh in- Faye Girsh: No. You're right. Dr. Bob: Only if the attending physician or the consulting physician feel that there is a mental health issue or a psychiatric issue that is impacting the person's ability to make a decision. Faye Girsh: You're right. It doesn't happen very often actually- Dr. Bob: No. Faye Girsh: That a mental health professional is required to make the decision about competency. I think in Oregon has happened very few times. We have- Dr. Bob: Yeah, because a physician is- Faye Girsh: Better data from Oregon than we have from many places else. We have 20 years of data that the government of Oregon has collected. No, you're absolutely right about that, Bob. Dr. Bob: Again, thank you for sharing. We definitely have strides to make. I think we both are feeling grateful that we have come to a place in California where people do have more choice and more options, but we do still need to continue pushing forward. There are still some issues and problems with the existing law. It doesn't address the needs of the people with cognitive impairment and dementia, and those are really challenging situations. Faye Girsh: And doctors are not being educated about what this law entails. I have a new primary care doctor that I talked to the other day at Scripps, and she didn't know anything about it. There's never been even, not only a policy described by Scripps but no education about the law at all. She didn't know what to tell me. She's going to find out and tell me later. But this is not acceptable. This is a law now, and even though everything is voluntary, so it's completely voluntary on the part of the doctor, the patient, the hospice, the pharmacist. That doesn't mean that people shouldn't be educated about it, and that's what we try to do in Hemlock. I just gave a speech to bunch of elder law attorneys, and before that to an Episcopal convention. And the more people we can talk to the better, but that's a drop in the bucket compared to the people who don't know what their rights are. And some hospitals have gone all out. Kaiser's very helpful in that respect, but my hospital, Scripps Clinic, they don't seem to know anything. It requires a massive educational effort, and it requires a little more cooperation and enthusiasm on the part of doctors and institutions, and definitely on the part of hospices. I think it's a disgrace that no hospice that we know of in this county will actually provide a doctor to do this for you. Many of them will refer to you, which is fine, but I think hospices should be able to assure a patient who comes for hospice care that if their suffering becomes too great, or they've had enough, that somebody will help them achieve a gentle death, which is what happens in Canada now, especially in Quebec, which has been the leader in this. The formally very Catholic province now, very progressive. And in Belgium and Holland. Their hospices will also provide peaceful death, voluntary euthanasia, but not ours. Dr. Bob: Not ours. Faye Girsh: And ours maintain that they can do everything in make dying fine for you and many of them can. I have no question about that. But for many people, there needs to be another option. Dr. Bob: And I always think about that when we hear from the palliative care and hospice folks, who are all very well-meaning, and compassionate, and they make it very clear that if the suffering becomes too great, then we can medicate people into unconsciousness. It's called palliative sedation, where you get medication so that you're no longer aware of your surroundings, no longer feeling pain, no longer feeling like you're struggling to breathe. And once you get medicated to that level, you will no longer be able to eat or drink, you won't have any nutrition, and eventually, you'll die of dehydration. And I understand that that is possible, and we for years have been doing that for or to patients. And my response to it is, if somebody has another option if somebody has the option of actually taking something on their own that will prevent that from being necessary, that they have the control, they get some of their power back, why wouldn't we want to make that available to them? Faye Girsh: I have debated that with so many hospice directors and doctors and nurses. I can't understand why the answer is not as simple as you make it. I mean, palliative sedation is very nice. I remember debating one hospice director, I guess she was, and she said, "No. Doctors should never help their patients die, never." But later she said, "When I see a patient in intractable suffering ..." well, she said pain, initially, but she was talking about suffering, " ... then, of course, I will administer something that will relieve them, and they won't wake up." Isn't that what I just said? No. Because the doctor has control over the decision, not the patient. Dr. Bob: Exactly. And I believe that's- Faye Girsh: And that's wrong. Dr. Bob: That's where the big divide is. The medical profession has so much ego, and we are unwilling to give control away. So instead of giving the patient and the family the ability to be empowered to have the option to act on their own, to make this determination, we need to do it for them or to them. We don't believe that people have the intelligence or the ability to make this determination of what's in their best interest. Faye Girsh: I'm not a great critic of the medical profession because I was married to one and I have given birth to one, and I like doctors very much in general. I've always liked the doctors I've had. It's some kind of paradox. I guess it's like politicians, you like the one you have, but then generally they're no good. I don't know what they need, education or something, and they need to be assured that they're protected from the law, because even though this law that we have, The End of Life Option Act, is clear that if a doctor does this, he or she is fully protected under the law. Somehow doctors don't believe it, and – again another generalization about what doctors think or do – they don't like to be bothered. There's a lot of paperwork ... you know this ... involved, there is not just, "Let's see. I write the prescription. Goodbye." You really should attend to your patients; you should find out what's going on with them. So they should be involved, and they don't want to be involved because that's not their job. I just saw a cartoon recently that said, "I'm a doctor, and I believe in preserving life at any cost." And the cartoons said, "Make sure you don't get that doctor." I mean, it's very nice. I do like people who are pro-life but up to a point. Up to the point where the patient says, "Okay. Death is not the worst option here. Staying alive under these conditions is worse, and I want to die gently and peacefully. And I don't want it to be a big secret, and I don't want to jeopardize anyone by helping me. Let's do it." And there's certainly more places in the world that are enlightened about this than we are. Dr. Bob: And I believe we're moving in the right direction as we both stated before. We have a lot of work to do, but we don't want to discount the fact that we are certainly in a better position than we were a couple years ago here in California. I try not to be critical of physicians. Many of my very good friends are physicians. I have spent a lot of time with some amazing physicians, and I think in general, doctors really do care a lot about people. They go into the profession because they're caring, and they want to help, and they want to do good. And it's not that they, in general, don't want to be bothered. They don't have the time; they're not allowed to have the kind of time that it takes to do this well. Many physicians are still very uncomfortable with the whole notion of death. When you go to medical school, and in your training, you would assume that there is no such thing as death because it's really never talked about. The textbooks don't mention anything about death. It's all about what we can do, how we can utilize the technology available to us, how we can do the right screening and prescribe people the- Faye Girsh: To prevent this from happening. Dr. Bob: So the training isn't there. A lot of people, I think, have to go through their own personal experience, they have to go through their own personal journey. Maybe have their own epiphany about what their role here is, and how they can best serve their patients. Faye Girsh: Bob, present company excluded, I don't think doctors need to be the agents of a peaceful death. In fact, when I was head of the National Hemlock Society, I started this program called Caring Friends where we educated our peers, older people like us ... I mean, I'm talking about the members of the Hemlock Society now, not you ... to work with people in their homes and tell them what means they could use to achieve a peaceful death, short of getting the drugs necessary. And there are many means. And of course one of them is not eating and drinking, but that's not the one we advocate. I'm talking now about the national organization called "Final Exit Network," which I was one of the founders, and that emanated from the Caring Friends program that I started at Hemlock. And we knew that doctors were not going to help, that we're not going to be able to get these drugs, which is the gold standard, but there are other ways. Now I'm using my Final Exit Network hat here–the guys at Final Exit Network teach people how to die peacefully, not using drugs, but using other means, which essentially lowers the oxygen in the brain, which causes a peaceful death but doesn't require drugs.   And there's an organization, a very loose organization, called Nutech, which has been working on this now for years, maybe 15 years, also started by Derek Humphry who started the Hemlock Society, New Techniques in Self-Deliverance. And I just went to a Nutech meeting in Toronto, where people from all over the world were there. It was a $5,000 reward for people who could come up with the best inventions so that people could do it themselves and die peacefully. So we're a long way from making an ideal situation, but there are situations that people can use, but that's not enough. I always gave the prototype of an 85-year-old woman. I'm about to be that. But an older person who's alone, who's sick, who may be partially blind, who is not mechanically inclined, a limit to what they can do to do this for themselves. So we do think that people should be there with them, and that's what they do in Final Exit Network. The Exit guide is present when people use these methods, and coaches them in how to use them. And we think we're covered under the First Amendment, but there's some litigation going on, which has challenged that assumption. Dr. Bob: Not surprising. Faye Girsh: No. But there are books, and videotapes, and YouTubes telling you how to end your life peacefully. And that certainly has its drawbacks because we don't believe that ... I mean, I am a psychologist by training, and I've worked with a lot of suicidal people, who with therapy have come to realize that suicide is not the answer to their problems. And it isn't. And there's a fine line between assisted dying and suicide, but generally, people who want help in dying would much prefer to live, but because of their disease or condition find that dying is preferable to living that way, whereas suicidal people don't want to live. They want to die. That's the difference. So if you make these methods available, then suicidal people have access to them, and that's arguable too. I mean, maybe it's better that they die peacefully than jump off bridges, as one of my very good friends did, or shoot themselves, as another very good friend did, and they could choose to die peacefully. That's a whole another discussion. Dr. Bob: Yeah. That's a whole another discussion. And I'm just thinking about, as I'm hearing you speak and discussing these topics that are certainly not part of the mainstream conversation that people are having, I'm just imagining that there are going to be people listening to this, who are squirming and feeling uncomfortable about these topics. And you know what? And that's okay. Faye Girsh: No doubt. Dr. Bob: These are things that we all really should explore and try to determine our own comfort level with them, and hopefully become more comfortable engaging in the entire spectrum of conversations about life and death. Faye Girsh: The Hemlock Society of San Diego, which has existed now for 30 years, is at a juncture of where to go next. We can continue having meetings and having speakers and everything else, but we do have to tackle these very naughty issues. And we are tackling them. Maybe we're the only organization in town if anywhere, that is doing it, but it does make people squirm. But we have a lot of people come to our meetings. They're all free. They're all open to the public, and they all deal with different issues about dying. To one meeting we had three veterinarians who talked about how they can help animals dying. It's so nice. Everybody was so jealous they wanted to grow two extra legs and a tail and be one of these animals that die in the arms of their loved one, peacefully and gently. A little shot in the paw and that's it. And then I've been a defender of Jack Kevorkian all these years. I thought, when he showed how his patient Tom Youk died, to 60 million viewers, that was a good thing, that we don't see people actually die and we don't even die on ICUs, or even in hospices. We don't see them junked out with drugs for days on end. We never see how people die except fictional, machine guns and that kind of thing. To see somebody get a lethal injection, keel over and he's dead, and how simple that was, and how desperately he longed for that relief from his ALS. This was the last patient that Doctor Kevorkian helped. And for that, Doctor Kevorkian spent eight years in prison doing a 10- to 25-year sentence that he got. For a doctor to come out and say this is what's important for doctors to do ... and the thing about Jack Kevorkian was there was nobody in the world practically, unless you were in the middle of a jungle somewhere, who hadn't heard of him, who didn't have an opinion about him, and who hadn't heard from his own patients why they wanted to die. And that kind of education thought, at that point, when Jack Kevorkian was I think in his seventh or eighth year of doing this, 75% of Americans believed that people should have assisted dying from a doctor. That's gone down considerably, because people don't hear about this, they don't engage in the dialogue, their doctors don't talk about it certainly, and it's up to us, the Hemlock Society of San Diego, and a few other organizations, to discuss this openly, so people know what the issues are. Dr. Bob: On that note, I think we're going to kind of wrap it up, but I do want to make sure that anybody who is interested in getting more information about anything that we've spoken about, that you've shared, has direction on how to get that information. I want to thank you for being a pioneer and for dedicating so much of your time and energy and money to this effort. There are many, many people who are indebted to you and have gratitude for the work that you and your tribe, your peers have done. Faye Girsh: Thank you very much, Bob. Dr. Bob: You're welcome. Faye Girsh: I'm getting to the point where a peaceful death is becoming more of an immediate issue, so I'm working extra hard, but I'm very glad you're around. Very comforting to me and many other people. Dr. Bob: And seeing you and being around you, you have vital energy, and I don't think it's going to be dissipating anytime soon. How do people learn more about the work that you're doing? Faye Girsh: Well, we have a website that's very informative, HemlockSocietySanDiego.org. And that will give you our phone number, which is 619-233-4418. We have, of course, an email address, which is ... I'm not even sure what it is. Dr. Bob: I'm sure they can get it off of the website, right? Faye Girsh: The website has all this information. And people are welcome to get on our email list to get a notification of our monthly meetings. And they're welcome to come, no charge. Although we will be having special meetings, I think now, for Hemlock members that we don't particularly want to share with the public, but that's another issue. Because we want people to be empowered the best way they can about ways to have a peaceful death. And not only for them, but we're having more young people come because their parents are dealing with this issue, or not dealing with it. Dr. Bob: And I've been to meetings, I've spoken at the meetings, and there's a wealth of information, and really some pretty incredible people there. I find that the level of intelligence and acceptance among the people who are really paying attention to these issues is very high. Faye Girsh: Yeah. And you've gotten to know some of them. Dr. Bob: I sure have. Faye Girsh: The ones that have had a peaceful death with your assistance. Maybe that's not the right word, but I don't know- Dr. Bob: That's fine. Faye Girsh: ... one has to be a very good- Dr. Bob: With my guidance. Faye Girsh: Guidance is a good word. Dr. Bob: And I've shared with our listeners some of the experiences that I've had and how powerful they've been. And the more people that I'm able to support and be with, the more strongly I feel about helping to spread the message and allow more people to understand how they can get this control, how can they be empowered when their life is coming to an end, and they're just like many of the people we've discussed. They're just not okay allowing this natural decline to decimate them further when they have a more peaceful, gentle option available. Faye Girsh: Thank you for doing this, Bob. And thank you for doing the podcast. I appreciate having an opportunity to talk about this. Dr. Bob: Yeah. Well, you're so articulate and passionate, and I look forward to our next conversation together. Faye Girsh: Absolutely. Dr. Bob: This is Doctor Bob Uslander, A Life and Death Conversation, until next time.

In a very candid and poignant conversation, Bill Andrews' sons share what their dad's end-of-life experience was like for them. Hear how they worked as a team to help their dad have the best death.     Note, if you haven't already listened to their father's episode, please click here to listen to Bill Andrews share why he chose to end his life after battling ALS. Transcript Dr. Bob: This episode is a follow-up to a previous podcast with Bill Andrews, a patient of mine who ended his life on October 23rd, 2017, using The End of Life Option Act, also known as Physician Aid in Dying, or Death With Dignity. The law, which became effective in California in June of 2016, allows a competent adult resident of California with a terminal illness to request from their attending physician a prescription for medication that will end their life in a peaceful and dignified manner. Bill Andrews had ALS, also known as Lou Gehrig's Disease. He was a surfer, a thrill-seeker, and an adventurer prior to the onset of this illness. He also was a devoted son, father, and grandfather. I recorded a podcast with him four days before he ended his life. Two of his sons were present for that interview, as well, and all three were with him when he died a few days later.  I invited Bill's sons, Chris, Eric, and Brian, to join me and share what they had learned from this experience, and to help carry on their father's legacy by helping others understand more about what it's like to help a loved one through the Aid in Dying process. Bill was a pioneer, and he was also a humanitarian. He wanted his death to have value for others, which I'm hopeful that these podcasts can help accomplish. This discussion is fairly graphic and detailed. Some people may find some of the content uncomfortable. Others will find it gripping and refreshing. I found it incredibly inspiring, to hear the words of these intelligent, thoughtful and grieving young men as they share what they went through as a family and honor their father, Bill Andrews. Please share this with others who may benefit and feel free to head to my website, integratedmdcare.com/newsite1, for additional information and support and other topics related to life and death. Welcome to another life and death conversation. This is Dr. Bob Uslander, your host and the founder of Integrated MD Care. Today is gonna be a bit of a different format, we're doing a group podcast, and I have a few gentlemen here with me who I shared a pretty special experience with just a couple months ago. I did a podcast interview with Bill Andrews; you may have listened to that one. Bill was quite a character, well loved and well respected, a gentleman who made the brave decision to end his own life after struggling with ALS for several years. I did an interview with Bill just a few days before he did end his life and he did it in the company and the presence of his family, and his sons, Brian, Chris and Eric, have decided that they wanted to speak and share their perspective and help others who may be trying to figure out how to navigate this terrain and how to support each other and their loved ones through this process. So I'm grateful and very please to introduce you to Brian, Eric, and Chris Andrews. Thanks for being here guys. Patient Son: Thanks, doctor. Patient Son: Thank you. Dr. Bob: Okay. There's a lot of things that we can talk about. There's a lot of different components to this, but one of the things I want you to share ... And you were on that podcast when we talked to your dad, and we got a little bit of your perspective on that, but he was the star of the show. You guys were in the background, but it was nice to have that. Now I'd like you to, in memory of him, in honor of him, we know that he was very, it was really important to him that people understood that this was an option and they understood why he took this option. Why he made the choice. From your perspective, can you share a little bit about why you felt it was so important for him to share his story? Patient Son: This is Brian. Dad loved being a pioneer in life. He liked being out in the forefront doing things in business that were new and innovative, and in his action sports lifestyle, surfing big waves, motor crossing areas that people had never been. I think he really felt good about being a pioneer and doing something here that was newly available. Dr. Bob: Okay. Patient Son: He really wants people to hear his story, and he was really happy to have done that, the podcast with you, and he really wants to get this information out for people considering this. Dr. Bob: That's cool. It's interesting to think about that, the pioneering spirit. I relate to that. I'm kind of, as a physician, a bit of a pioneer in this realm. Of course, had he not been dealing with a terminal illness that was challenging him every day and getting worse, he probably would have found other ways to pioneer, right? Patient Son: Yeah. Dr. Bob: But this was an opportunity for him to take his own experience and what he had to deal with and go through and hopefully allow others to benefit from it. So, not just being a pioneer, but being a humanitarian, I think. Patient Son: He's always loved helping people and helping to share wisdom and teach and coach. That's just the kind of guy he was, so yeah, this is good. Dr. Bob: Yeah. How long before he actually, his life ended, did he start talking about this being an option for him? Patient Son: I don't he knew it was an option to be honest with you 100%. But I think it was something that we discovered along the way, and it might have been Brian who brought it to his attention as an option to look into. Dr. Bob: Okay. Patient Son: We were reading all about ALS and how it was gonna end. But the question was when and how right? So we were just learning so much about it and reading about it and meeting people, going to support groups. You know at some point it's gonna end. The average time was supposed to be two to three years, and so we didn't know how long. It turned out to only be, from diagnosis, it turned out to only be a year for dad. Through that journey of reading about that we read about this option and talked about it. Dr. Bob: And so you discussed it with him. Did you guys discuss it with each other first? Patient Son: We did. We shared it with each other and just, you know, it was earlier on. I think that was maybe in the first month or so after his diagnosis. It was around the holidays a year ago. We had read about that and said, "Well, this is something we should keep our eye on." We knew we were going to go through a journey together. We just wanted to have that as something to learn about and so we did. I think dad was also reading on his own and I'm sure he read about it as well. It's something we ended up talking about together. Patient Son: ALS was not something that I think any of us knew anything about prior to his diagnosis. It's the type of thing we all had to be learning about as we were going through it. We were also trying to form opinions about it as we were going through it. I think that when Brian came across the Death with Dignity website, and there were some other materials that kind of lead us to that path to look at that. It wasn't like, "Hey, what do you guys think?" It was just like, "Let's just read this and try and understand this a bit." The whole process was a lot of like learning, talking, digesting everything. Like facts, emotions, decisions, kind of all doing it simultaneously. But yeah, we really, it was something that we brought to his, for him. Dr. Bob: Which is unusual. You don't have much other exposure to this, but it's unusual that families bring it to a person. In my experience, most of the time, the individual is the one who has been either, for years has been kind of secretly knowing that if things got to a certain point if they develop these challenges, that they would want to look for that out. But most of the time, the family members bring ... the patient, the one who's dying, brings it to the family members and they have to try to convince the family members that it's the right thing for them. That's what I see more often. I think it speaks a lot to your relationship with him and your level of love and trust, that you felt that you could bring something like that onto the table and talk about it as a family looking at all the different options that were out there. This is never the first option. This is never what anyone is hoping for. It's always after exhausting all the other possibilities. But as it turns out in many cases, it's the best of the various options that are out there. So you guys, at what point did you speak of this to a physician? At what point did, and I know, but for the listeners there, what was the path that was taken once it was discussed as a family? Patient Son: We had seen one of dad's primary physicians, and they had a good relationship with one another. End of life, quality of life was a big conversation between those two, especially within the last year. We weren't a part of those conversations until recently when we started going to the appointments with dad, you know, having to take him there and so forth. So being there gave us exposure to some of those conversations, and it was no surprise to his physician, approximately two months before dad left us, that we went to him with that formal request. He was ready for that call. Dr. Bob: Okay. And even though he wasn't necessarily familiar with the specifics or how to put things in place, he was receptive and willing to support your dad through that? Patient Son: Very much so. Dr. Bob: Great. I know that that's ... How long was it between that conversation and when he reached out to me? Do you have any idea? Was there much time lapse in there? Patient Son: Yeah. He doesn't know the exact time. Patient Son: I think it was about four to six weeks. We had the conversation saying, "We're ready to move forward." We had some learning to do on our side that took some days and some weeks. Our physician wasn't familiar with the process whatsoever, so he needed to do his own research as well. Two, three weeks went by, we realized together, with the physician, that we were at a stalemate. It was at that point that we decided to explore other options and getting some additional help, and that's how we met you. Dr. Bob: Great, yeah. I had met him. I had a prior relationship with this physician. He, I guess put the word out that he was looking for someone who knew more about it. Patient Son: He did. Dr. Bob: And then we connected, and I think it worked out well. He got to be involved, as everybody wanted because he had that relationship and you got the benefit of working with someone who knew how to get you down that path. Patient Son: Yeah, you ended taking over as the primary and then he took over as the supporting physician. Dr. Bob: Right, it worked out really well. Patient Son: It worked out great. Everything was smooth once we got rolling on that program. Dr. Bob: And he deserved that, he deserved smooth sailing because there's a lot of folks who start down this path and they just hit one roadblock after another, one obstacle after another. And either they struggle for longer, or they often get passed the point where they can even take advantage of this, which is really unfortunate. Patient Son: We actually had that as a time constraint, because dad has the ability to walk and his arms were getting really weak, and his hands, gripping was getting weak. We had to start hand feeding him in his final week. So it wasn't too much time left because he could life a cup with a few ounces of weight and drink when he needed to do, even do any other way to self-administer. Self-administering was a requirement, so we had a time horizon that was limited. So we were getting a little bit, a little nervous about that as time marched on, which is another reason we contacted you to help get things moving. Because he really wanted that, he had talked about having three options. He could just let the disease take his course and he'd starve to death and wouldn't be able to breathe. He didn't want to go through that, but that would have been his second choice. The other option was to be kept alive through any medical means possible, feeding tube and ventilator. He did not want to do that. So that's what knew right from the beginning, he did not want to be kept alive, didn't want to be bed-ridden, didn't want to be having this, any medical means to keep him going. Because he lived a great life, and he was ready to go, so that was the last of the options, and this became his leading options hands down, was to take this California End of Life, with a graceful ending on his terms, not having the disease run its course all the way to the end. He was getting very close. We were only I think a few weeks away at the most.  Dr. Bob: As things were changing? Patient Son: Yeah, things were changing pretty fast for him. Dr. Bob: Yeah. I know that it's hard to even imagine how frightening that would be. Even though he knew that he had plan B, but he knew that that was going to be difficult for everybody. It was going to be challenging for him, and it would have been difficult for the family to watch somebody going through that. So I know that he was very, very determined to be in control. We know that he set a date, and setting a date is probably a bit challenging because you have children who live in different parts of the country, and he wanted to be accommodating.  He wanted to make sure that everybody could be there and participate, but he didn't want to push it off too far because he was worried about the possibility that he would lose the ability. He also didn't want to cut offany more of his life than he had to because he loved the people who were around him. He still loved life; he just hated the circumstances. So when I talked with him, he was four days out from the date that he had set. We knew at that time that he was not going to change his mind, he was determined. Can you talk a little bit about what it was like from your perspective to be setting a date for your father to be ending his life? Patient Son: That's a terrific question, Chris. Do you want to start Eric? Patient Son: Yeah, I feel like jumping in. I think this is sort of like the piece that was ... I think were saying it was a little morbid, but it was also really amazing. It ended up being fascinating. Typically, when someone dies they die, and then they're gone, and you have to deal with everything all at ones. You have to deal with your emotions and the planning and logistics. You have to deal with everything all at once. But what this afforded us was an opportunity to chip away at all these things. We knew his day was approaching, so we all knew that we could say our goodbyes. It also meant that we could be emotional one day and they be very pragmatic another day, and just say, "What should we take care of today?" Because we had time, we didn't have to deal with it all at once. You could deal with it as you were leading up to the day. It was really comforting. It gave everyone the time and the space to wrap things up in a way that we all needed to individually. I always tell people, it's like a really weird experience, but I got to write his eulogy and then read it to him. There was one part that I didn't say very well, and so I actually rewrote a part of it and then read it again to him. No one gets to do that. I thought that that was a really special opportunity that this afforded us, that I found fascinating. Patient Son: His, dad's terms were reverse engineering. He was an engineer. He liked planning things. His goal was to pick a date that would work well for the family. Once we did that, then all the other pieces fell into place. So picking the actual date was pretty easy for us, because dad was not doing well at all, getting worse day by day, having a harder time day by day, so the sooner, the better.  He wanted to take advantage of the quickest it could happen, you know after the process, which was about a little longer than two weeks, 14, 15 days, something like that. So we worked together, the three sons and dad, to pick a date that would work best for everybody. Then, from there, worked backwards to what he wanted to do and what we wanted to do leading up to that date. Patient Son: Cool. Eric, you should tell him about the day before, like what ... Patient Son: Do you want to get into that or some of the things that happened before then? [crosstalk 00:19:41] Dr. Bob: No, no. I think it would be fascinating, but do you have anything you wanted to add- Patient Son: Yeah, I'll comment on the date. Dr. Bob: ... about setting the date? Patient Son: Yeah, it was a powerful, impactful moment to set the date. We bounced around on phone calls and texts, trying to pick a date. Dad, when he was ready, he was ready. He was, "As soon as possible," but I want to make sure it works out for all of us because we have our families and birthdays and holidays. He was ready to go, time off work. He was really concerned about a date that would work for all of us, but he was ready, so of course, we wanted to accommodate him with as early as we could pull it off. So we bounced around a couple of dates. We had one and then we actually switched. We had to have Chris come out from New York, and thinking about your family when they would come out. I would just say that it was a heavy moment to set the date, but also it was very freeing at the same time because we did have it on the calendar. We circled that date, and then we could reverse engineer it and start to plan all these activities. So it kind of gut us unstuck and it started some real positive moves to happen, to have that. But it was powerful. Dr. Bob: I imagine it amazing freeing for him too. Patient Son: It was. Dr. Bob: I mean it sounds ... I think that I hear families talk more about how knowing the date makes it more real, and sometimes even more uncomfortable. You guys are unusual in that I get the sense that you guys are all, you were so deeply connected with your dad that you were experiencing this as he was experiencing it, not separate. I mean yeah, you have to think about how it's going to impact you and deal with those feelings, but I really felt like you completely put him first, and that was the only thing that really mattered, was making sure that he got what he needed to get, and with as little interference or struggle as possible. Patient Son: Yes, it's very true. I think we're just like every other family; nobody's perfect. We've all had our disagreements throughout the years and certainly some tough times all growing up; things weren't always perfect. But the disease brought us together, and then this decision brought us together even closer, which was fantastic. Dr. Bob: Cool. That's a gift. Patient Son: It was. We all had our own unique relationships with him for sure. When the disease diagnosis was given a year prior, we said, "We're going to really bond as a team." We had a team name, Team Keep Paddling, dad's a big surfer, right? So he always said, "Just keep paddling. If you ever want to give up, just keep reminding yourself to keep paddling. One more wave, paddle, don't give up. Bust through the white water and get out there and catch that last wave." So that's what, we formed our team name, and we were all about being together. It's actually the best team I've ever been on in my life, in any sports team or work team. This team, this Team Keep Paddling, was the best team I've ever been on. Dr. Bob: That's wonderful. I just had an image that came to me. I'm sure that your dad taught each of you to surf. Whether you kept surfing or not, at some point, I imagine that he'd spent his time pushing you into the waves and getting you up there. I just had this image of you guys, because he couldn't move, he couldn't walk, he couldn't do it, that you guys sort of pushed him into the wave. Patient Son: That's really good. Dr. Bob: [crosstalk 00:23:31] into that final wave. Patient Son: You're right. Dr. Bob: And he rode that wave in. Patient Son: Something I think the three of us did really well together, was that I think when this first started, there was a lot of, "I, I, I, I," type of thing. "I feel this way. I might do it this way," and so forth. Then you, as time goes by and the situation gets worse, you tend to ... well at least for us I think it became more about dad. You know, what he wanted. It was crystal clear towards the end that all the decisions that we should make were in his best interest and making sure that he could go out the way in which he wanted. We're very proud of our team work together to support him. He was so happy at the end. We can live the rest of our lives knowing that we did the right thing for him. Dr. Bob: Yeah, and you created that piece for him in that place, and part of that was that you guys were coming together and working in that way and that you always ... I'm thinking about my own experience with my parents and how that affected me, but now that you know what it feels like to fully support someone, to remove your own needs from that, it affects everything. You can never un-know that. You always recognize that there's a part of you that is able to completely forget about your own needs and put others first. This is potentially the culmination of that, but it changes us, right? When we do that it changes us, and all of our other relationships going forward are influenced by that, which is pretty cool. So that's another gift. His gifts continue to be apparent. Patient Son: Yeah. You're right. Dr. Bob: So you guys, you alluded to this, and I definitely want to talk, you created, the whole couple of day leading to and including the day of his death were pretty incredible. You want to talk a little bit about that? Patient Son: The things towards the end that were very important to him, which they were forever just reinforced a little bit, were some time with his sons, some time with his family, some time with his grandchildren. So the day before he passed we set it up so that the grandkids could spend some time with him in his room as residents. We weren't sure how that would go so we just kept bouncing ideas off each other about what would be comfortable for everybody. We thought just opening the room up and letting the kids run around and play and be themselves was the right thing to do, because that's what they're good at and that's what dad wanted to see them do. We had a couple activities. One of which was we made a t-shirt for dad that we would were the following day. Patient Son: It was his idea. Patient Son: It was dad's idea, right. Why don't you talk about the shirt? Patient Son: [crosstalk 00:26:53] told you. Patient Son: We thought this was really special. He'd said ... We were actually trying to talk ... He wanted to know who should be in the room the day that he was actually going to go through with this. We talk about it, and he said, "Well ... " He's like, "Obviously I don't want the grandkids in the room." He's like, "What would be amazing is if, when you guys bring them over to play, bring a white t-shirt and some paint. I want them all to put their hand prints on the t-shirt, and I'll wear it.  That way the next day I'll feel like they're in the room with me." It was super sweet, and so we did that, as part of the day before. We had the kids come over, and they thought it was a lot of fun.  But maybe they didn't realize at the time they were actually making him a really amazing memento. And then Eric had another amazing idea... He bought a plain white sheet, and he bought a ton of fabric pens and paints. He had all the kids; it was Eric's idea, he had all the kids draw pictures, "Just draw whatever you want." Whether they knew it or not, the age range in the room, how old is Paige? She's 10? Patient Son: 12. Patient Son: 12. The kids ranged from two years old to 12 years old, and they were six of them. We put a big tarp out and the thing, and they all went to town on it. After they were done, they got in a little line and one by one they brought ... We put the sheet over dad and one by one they each pointed to their artwork and explained what they drew and why they drew it for him. What was really special is that we didn't really say, we didn't say, "Draw something intense," but they all I think were feeling the moment, and they did in their own ways. Each one of them got to express through pictures something for him. At the end of the day, he had a t-shirt to wear and this beautiful artwork on a sheet that he go to bring with him the next day. Dr. Bob: When I went over that next day, he was beaming. He was so proud of what he was wearing and just talking about that experience from the day before. That was brilliant. That was brilliant. Patient Son: In addition to seeing the kids and spending some time with them, he also had a couple places that he wanted to visit one last time. Two of which were his favorite beaches, where he wanted to get down there and smell the air one more time, see the waves one more time. We were able to make one of those trips, the other one he just wasn't feeling well physically to go down and make that trip. But we were able to get down to the beach. He wanted to see his grandkids and some sporting events, so he came and watched some flag football, some baseball, some gymnastics. That was important. He had some great meals towards the end; he would eat whatever we want, so we were bringing him things from all over San Diego, some of his favorites. And then also spending some time with his brother, his sister, his mom, close family, as well as some of his dearest friends. He had hundreds and hundreds of friends, so many he knew so well. But there were a handful in particular that he wanted to have some special conversations. So there was a lot that happened. He was able to cross off just about every single thing on that list within that short window of time that we had, or that he had, to be able to follow through this way. Patient Son: I think Eric told you, dad reverse engineered things. So he knew that on the day, it was not a day for goodbyes, it wanted it to be just a business day, where we just took care of things. The day before he wanted to see his grandkids. The days before that, he leaned on us to basically setup times for people to come through. It was very organized. This is exactly the way he wanted it. Patient Son: Went through all the pictures and he explained where places where and who people were. All that was just quality time. Patient Son: One cool think he did that I thought was really special too is he talked about time a lot in the end. When we picked a date it sort of made time more real, but he often said, beyond this, that time is the greatest gift. In the context of running towards the date that he picked, time became more real. But one cool thing he did was he recorded a bunch of things. So he had, I don't know, a checklist of 50 recordings that he wanted to do. He wanted to say something to each grandkids. Patient Son: His own voice recordings. Patient Son: He wanted to something to his friends. He had all these things that he wanted to get out. Obviously, he couldn't write anymore, and so he recorded his voice. But again, having that time, having that date is what enabled him to feel like he could accomplish something. Like, "Alright, I've got to see these people and do these things and make these recordings, and this is what I'm going to do." Patient Son: While he had a completely sound mind and was full of life mentally, just the body was breaking down. But we got to take advantage of that all the way to the end. Completely sound mind and great conversations, all the way to the end. That was a gift. Dr. Bob: Incredible. It's incredible. I didn't know about those recordings. I do know how structured his time was towards the end, because I had to come out and make another visit with him, and I had a short window. I was fit in between a whole bunch of other people there. I was like, "Come on, I'm the important one." Apparently not. Anyway. Talk a little bit about the last day. I think it's important for people to hear what that experience is like from the perspective of those who have helped to allow it and create it if you're comfortable with that. Patient Son: Sure, yeah. I mean, it was surreal, being the last day, for sure. He had hospice care. They were amazing, amazing people. They came by and gave him a shave and a bath. He smelled like a rose. Patient Son: He spoke very complimentary about the people who bathed him and supported him. Patient Son: Yeah. They were phenomenal, really amazing people. So, he got clean, he got dressed in his shirt, and he had the sheet. We had some time together in the morning to have a few more conversations, but he wanted to keep it pretty light that day. He already felt like he had said everything he needed to say, so that last day was just being together. We played some music, some of his favorite songs. We ordered the prescription. That prescription was delivered on that day. It's how that works. Between the order that you put in for that prescription, and they made the delivery to us. That kind of dictated our time window a bit. We didn't have the luxury of having that medication already in hand and waiting for that. So we had to make that happen all that day. But they were great as far as getting that to us pretty rapidly, just a couple hours and we had the medication in hand. Then we had planned to have everybody over. We had his mom and his brother and his sister and our mom and the three of us together all day. We had everybody planned to come over at a certain time once we had time to get the medication. Dr. Bob: You guys want to talk a little bit about that final hour or so? Patient Son: His last day went as good as we could have scripted it, I guess is the most important thing. I agree when you say he wanted to keep it light and so forth. For me personally, it almost ... I hope this doesn't sound cold, but it felt almost as if a formality, because we were able to spend quite a bit of time with him leading up to it, having a chance to say everything that we wanted to say. So that day became just being there for him, as proud, encouraged and strong as he was, he was probably feeling scared, although he'd never admit it. So it was just letting everything go and just being there for him and holding his hand and just telling him a couple more times how much we loved him, and then supporting the other ones in the room who had a tough time with it. Just kind of being there together, and luckily you did a great job for us, where we didn't feel any sort of stress. It just felt calm and the way it was supposed to go, I guess. I'll remember those things, that it was a beautiful day, it worked out perfectly, wouldn't have changed a thing. It all happened pretty quick. Dr. Bob: Were you nervous? Were you nervous about things potentially going badly? Is that a thought that you had? Patient Son: Me personally, no, because I didn't know enough about the medicines or things to understand the true percentage of them not working or something. The family, we were all so communicative together that I knew there would be no outburst or something emotional from anybody in the room. You're always a little nervous I guess in any situation, especially one like this, that it might not go well. But I was so confident and feeling so good for him at the time, that it erased any stress I think leading up to it. Patient Son: I would just say thank you to you too. I think having you; there was ... as I understand you don't have to have a- Dr. Bob: No, there's no requirement to have a medical person there. Patient Son: That would have made me nervous of think. Having you there with us was really ... Patient Son: Yes, agree. Patient Son: I don't know, it was calming and assuring. It was really great for you to tell everybody in the room too what to expect, here's what's going to happen, as we get rolling. It calmed a lot of the ... a lot of confidence that there was actually someone here who had done this before and this is going to be okay. I think without you I would have been more nervous. Patient Son: Yeah, me too. Me too. We knew from you that the medications were going to work. That was undoubtable. So then it was a matter of what it would be like for us in the room and how gentle it would be. That's what was an unknown. Dad was totally at peace. He had said even that three to five days prior, that was the most peaceful time of his life. He felt so confident and was looking forward to that day actually, this next adventure that he was going to go on free from his body with ALS. We all felt very positively about the day. We have had zero regrets and have felt good about it all along to this day. But he was at peace. With his mom there, she was 95 at the time; she just celebrated her 96th birthday. Everyone came over; it was about one o'clock in the afternoon.   We were going to give about an hour or so, a little over an hour, to just be with him, as with the larger family who were there earlier. So his mom came by, and his brother and sister and so on. One thing that was a little bit different for us is we have to prepare the medication. You explained this to us and were totally prepared for it. But with the medications, there's an anti-nausea, those are done an hour prior. Then you get into the; in our case, it was Seconal we used. So we had to open up the 100 capsules. We did that together, the three of us. We got, banged through it pretty quick, it seemed like 20, 30 minutes maybe to do that, 20 minutes maybe. But that was a process to go through. We had the family in the room, and we were going through and opening these and getting it ready. That was a little bit- Dr. Bob: Distracting. Patient Son: A little bit. Dr. Bob: Yeah. Patient Son: Yeah. We weren't just sitting with him; we were opening these capsules and so on. But it was part of the process. We understand that there's no other option right now. We knew that was a proven medication that was going to work and so that was the choice all along. It was just a process... Dr. Bob: Chris? Patient Son: Yeah. This is the only kind of negative part for me I think, was I didn't know. I didn't realize, that we were going get 100 of these capsules and have to break them open and empty them out. It was a little unexpected thing that I felt kind of threw off a little bit of the vibe because everything was so peaceful and we had confidence. All of a sudden, I don't want to speak for you guys, but I didn't feel 100% confident that I was doing it right or that, am I allowed to touch this stuff? Do I inhale this? It was a little weird for me in the moment. And then, I didn't really care until our grandma came and his brother and sister, and I felt like we weren't done with that part yet. So I felt like they were seeing the sausage get made or something, and I was like, that part freaked me out a little bit because I would have rather that just been done. It was the one thing I felt like wasn't exactly ... I mean, it sounds really hyper about our schedule. But it schedule and that part was a little frustrating for me. I think emotionally it was a little weird too because I felt like I was really participating with kind of this medieval act of poison or something. That part I didn't love so much, but I think had we been able to do it earlier, not too much earlier but just earlier enough, where I didn't feel stressed about it with other people in the room and ... Dr. Bob: I think ... So, part of the comfort level and knowing what's safe or reducing that stress, that's on me. I could have certainly given you a bit more information. But now that I'm remembering, you couldn't have done it earlier because of the timeframe. The medication was just delivered that day. Patient Son: It was just delivered. Dr. Bob: And he wasn't going to wait. Patient Son: I would have just told them to come later... Dr. Bob: So for anyone who's listening and you're in the process of planning, this is something to keep in mind. And there is another medication. Just to make sure that it's clear, there is another medication besides Seconal, and it's called DDMP2, which is a combination of powders. It's morphine and Valium and a couple of heart medications. But I typically don't recommend that to my patients, because it's not quite as proven, it's not always as smooth and quick. You might have had a very different experience had he taken that because sometimes it takes hours, rather than the minutes that it took your dad to gently stop breathing. So there are other options. I appreciate you sharing that because it's part of the experience. Patient Son: It was. Dr. Bob: This is a conversation. We're not trying to gloss over anything. We're not trying to make it sound simple or anything other than what it is. This was a very; it was a very meaningful difficult, beautiful, challenging time. It was all of that. I will never forget your grandmother doing the hula. Dr. Bob: She was incredibly special. Was that her idea? Patient Son: It was. Patient Son: Completely her idea. 95 years old at the time, and she spent a lot of time in Hawaii, spent 20 years or so out in Hawaii. So she learned hula out there, and she was a swimmer, very active and learned to dance. She had this idea that she was going to do this hula for him, to send him off on his next journey. So she stood at the foot of his bed. They had their eyes locked, and she did this amazing dance, stood up, she kind of leaned against the bed a little bit to steady herself. She did this amazing hula. Their eyes were locked, and dad looked so happy. He was just smiling, beaming. It was a beautiful moment. We all were blown away by that. But the connection they had, it was amazing. Dr. Bob: Yeah, it was beyond description. And she wasn't just dancing and granted this was a 95 year old dancing; it wasn't- Patient Son: Mostly upper body. Dr. Bob: Mostly upper body. Patient Son: Part of the hula, maybe people ... I'm not an expert in this but it's singing and dancing combine into a really beautiful choreographed moment. She choreographed not only the movement but also she wrote and sang her own song. The essence of the song was about passage, safe passage. It had a surf, nautical kind of thing happening. It was about letting him pass through. It was his mom, saying, "It's okay," and giving him that comfort like it's okay. It was through beautiful hand movements and song. It was really pretty. Dr. Bob: Yeah. And I believe it ended with, "And I will see you before long." Patient Son: Yeah. Yeah. Patient Son: That's right. Patient Son: It was her way to say goodbye. It was very beautiful. Yeah, it's crazy. Dr. Bob: Yeah, and then he reiterated how incredibly at peace he was. I truly, as difficult as this is, to be part of these experiences, truly it's incredibly gratifying to see the depth of the connection and to know that you're left with this beautiful memory that you allowed him to have this peaceful end and to be in control at the end of his life. I thank you. I thank you for being here and for sharing this. I know it's not easy to talk about, it's still so fresh. Is there anything else that you feel really strongly that you want to share that's coming up? Don't feel pressured, I don't want to end this with you having something that you think needs to be said. Patient Son: Well, the actual, once he took the medication it was very peaceful. We weren't sure what to expect. It took 19 minutes from start to finish. He was asleep within a minute or so, a minute or two at the most. Very, very peaceful. He started out with just a relaxed breathing, and it slowed and slowed and drifted off. It was very peaceful. We were all gathered around him and holding him. It couldn't have been better from that perspective. We've always felt good about it; I guess that's a true test. Two months later, here we are, and we're feeling like it was absolutely the right decision for him to make. We were happy to be a part of that for him, to support him, what he needed to do given the scenario. Thank you, Dr. Bob, for helping us with that. Dr. Bob: It was my honor. Patient Son: I would add to that, that since this has happened a lot of people have asked about it. Telling people about this is cathartic because it kind of helps to tell. But it also makes me realize how little people know about the Right To Die Act. It's something when you start telling them your story, they get very engaged, and they're very interested. They want to know more about it. I think it's just not a lot of people know about this but everybody I talk to and tell the story to is fascinated with the dignity and the choice and the control, and dying in a way that's very graceful. What you hear from other people is like, "That was not my experience." My grandma or my father, whoever died, they died very bad. It was not good for anybody. So to hear this side, it's almost like they're like, "Wow, I wish we could have had that. I wish we could have gone through that." It's interesting that when you bring it up ... no one would ever bring it up, but when you talk about it, it does open up a really interesting conversation. Dr. Bob: Well, that's why I so appreciate you being here and being willing to have this conversation because this is the kind of thing that people, they need to be able to share these discussions. Imagine what my party conversations are like. My wife hates going to parties with me because invariably people ask what I do, and we start talking about these conversations, about situations. Then they start telling about their experiences. For me, I live and breathe it, but I recognize that not everybody has the same comfort level with it. But people are fascinated when they understand that there is another better option. Patient Son: I'd just say that the whole thing is so sad in terms of the disease and knowing nothing about it until he was diagnosed. To see how he deteriorated physically so fast. The disease doesn't normally have pain associated with it, but he was a different case where he had so many orthopedic issues from surgeries, he was in incredible amounts of pain. It was so sad to see that. For him to be able to make this decision and to escape that pain while being so sharp mentally and so forth. I think it was one of the best things that happened in this journey. Like my brother said, we're so appreciative because we cared about him so much, and so many people in San Diego and the surrounding communities do. He was very well loved, and he deserved, like so many other people in this world, to go out the way that he did, on his own terms. Thank you so much. We'll always be appreciative for that. Dr. Bob: Alright guys. So Chris, Brian, Eric, thanks for being part of the conversation. You're awesome. Thank you all for tuning in to this episode of Life and Death Conversation.

Elizabeth Semenova is the Director of Operations at Integrated MD Care. She shares her insights and personal stories about dealing with loss.     The holidays can be an especially difficult time, listen to how Elizabeth handled her own loss and how she and Dr. Bob help others. Transcript Dr. Bob: Welcome to A Life and Death Conversation with Dr. Bob Bob Uslander. I'm here with a guest who I'm excited to introduce everybody to, and somebody who has a wealth of experience and insights. And I'm very pleased to have her as part of my expanding team here at Integrated MD Care. So you're going to get to know quite a bit about my new director of operations for the practice, Elizabeth Semenova.Elizabeth, say hello to our listeners. Elizabeth: Hello. Dr. Bob: So Elizabeth came to us a few months back. And the way that we initially met was through a referral that she had made to us for a gentleman who was struggling with Parkinson's disease and was really at the tail end of his life, and Elizabeth made a recommendation that he contact us. And it was a real blessing for us to be able to meet this gentleman and guide him through the last weeks of his life. After that, we just had a few more encounters. And, Elizabeth, maybe you can share how what it was about what we do that drew you in and kind of encouraged to you to reach out and try to become part of the tribe. Elizabeth : Well, after I referred friends, clients to you, I looked more into what it is that you do and how you do it, and explored information that I received from other sources about your work, and I was inspired by your openness to life and death and your perspective on the importance of accepting and talking about death as a part of life. I was particularly intrigued by your willingness to support patients and families who are looking for resources, education, and services regarding the End of Life Option Act in California. So that's how I came to connect with your practice. Dr. Bob: Cool. Well, we're very happy that you did, and just to kind of summarize, Elizabeth came on, and we didn't have a social worker who was working with us. Elizabeth has a master's in social work and had been working as a social worker within the hospice world for several years. And we were really blessed to have her come and go out. She went out on a handful of patient visits when I was doing initial evaluations for people who were looking at aid and dying. And it was a real blessing to have her expertise and just her presence there to support those patients and families. Then we just had some changes at the office, and it became very clear that Elizabeth had a strong leadership ... had some strong leadership experience and genes. And everybody in the practice really felt comfortable with her guidance, and I offered her the position to help lead the practice, which has been great. So it's just been a short time, but the difference in our efficiency and just getting things done has jumped quite a bit. So we appreciate your very wise counsel and leadership, and it will continue to be a blessing for all of us for a long time to come. Elizabeth: I'm very humbled by your confidence and appreciation. Dr. Bob: Well, there's more to come. So let's talk a little bit ... We've had some conversations, many conversations around our individual kind of perspectives and feelings about death and how to work with people through those challenges. I know that you've had some very personal experience with loss and death in your life, and I'd like to hear a bit about that if you're comfortable sharing. And let's see how we can provide some valuable guidance, comfort, wisdom for some other people who might need that at this point. Elizabeth: Sure. I first encountered grief and loss and bereavement when I was in seminary, and I took a class on the subject. I remember being very inspired by everything that we read and discussed, but feeling a little disconnected from it, not really knowing how to understand it or contextualize it. Dr. Bob: Had you had any personal loss up until that point? Elizabeth: I had lost grandparents, but no unexpected losses, no tragic losses at that point. And several years later, I was living in Colorado with my daughter, who was nine at the time, and we received a phone call from my brother-in-law, who was my daughter's father's brother. So my daughter's father and I were married when she was a baby and had since separated but stayed very, very close as family and friends. And his brother called me to let me know that he had died suddenly in a car accident. That was my first real experience with death and loss. And at the time, as I said, my daughter was nine. So my purpose was to make the process as comfortable and manageable for her as I could, to do what I could to contribute to her healing and resilience in dealing with the loss of her father. Dr. Bob: So you were dealing with it on your own and then having to understand, learn how to navigate that for her as well. Elizabeth: Yes, and I think that I didn't deal much with it on my own at first because I was so focused on caring for her. The initial loss was devastating. I mean, the pain in my body and the tears were endless. And I remember reaching out to friends and just feeling so lost and unable to think or function or grapple with the pain that was physical as well as spiritual and emotional, which really surprised me. I didn't realize that that was something that could happen. But I turned my attention to making sure that she was okay. So it was really a few years before I started to deal with my own experience of the loss. Dr. Bob: Had you had at that point training in ... Had you been through the social work training or had been involved in any way with hospice? Elizabeth: No. At that point, I hadn't had any experience end-of-life care, palliative care, hospice care. I went into my master's program in social work later, so I had been involved in social services but not in any official certified capacity and not with this field at all. I'd worked a lot with homeless populations, mental health recovery, addiction recovery and really didn't have any context for dealing with loss other than what I had touched upon briefly in seminary. Dr. Bob: So now several years later, you're in a very different place. You have a whole different set of experiences and knowledge base. And so it's interesting because you can probably look back at how you managed and how you responded to things and helped your daughter, and see it through a different lens because you would probably ... I'm assuming that that experience helped educate you about how to support others who might find themselves in similar circumstances going forward. Is that a fair assessment? Elizabeth: I think that's right, although I would say that the experience of a sudden tragic loss that is unexpected is very different from the experience of being with someone on hospice or someone who is more naturally at the end of their life. My father-in-law died several years later on hospice of cancer, and we had the opportunity to be with him, and to say goodbye, and to share love and memory with the family. I would say that that educated me more on how to be a hospice social worker than the experience of losing Natalia's father. Dr. Bob: I get that. Yeah, for me, the loss of my parents, neither of which was completely unexpected--they each had their struggles in different capacities, but it wasn't sudden and traumatic, which adds just a whole multiple layers of complexity to, I imagine to the grieving process. So can you share ... Do you have some thoughts that you'd like to share for people who might be in circumstances like that, who might still be grieving after a traumatic loss, especially with respect to children? Elizabeth: Sure. Dr. Bob: Not to put you on the spot, but I just- Elizabeth: I would say that the first most important thing is to reach out to people, to stay connected because it's an extremely isolating emotional experience. It's rare, and it can feel uncommon and lonely, so in order to stay stabilized, especially on behalf of my daughter, reaching out was really an important part of making things work. In the context of helping my daughter, I had never experienced that kind of loss as a child, so I didn't know what she might need from first-hand experience. So I reached out to friends of mine who had lost parents at a very young age, and I had two friends in particular who were very helpful in sharing with me their experience, what was important to them, what they felt was missing from care that could've been provided for them. The thing that stood out the most to me was they talked a great deal about people shying away from the subject and how that was detrimental to their recovery, to their healing, to their resiliency. So I made efforts to be very open and communicative with my daughter about the circumstances of the loss, the experience of the loss both for her and for other family members, and to share vulnerability of my own sorrow with her. And I think that that openness has been helpful to her. I think that she would say that we've created a safe space for her to be however she is, and to feel however she feels, and to share that, and to not feel alone with it. Dr. Bob: I think that's probably really critical to not feel like there is ... just to feel like it's okay to feel however you feel and not to have any expectation or to feel like, "Oh my goodness, it's been four years or five years, and I should be over it, but it's still painful," but for you to allow that and to help them see that this too shall pass. Things cycle and the feelings will come, and they will go, and to be able to freely express that has got to be critical. Elizabeth: Yeah, and I think another thing that really stood out was that everybody's grief experience is different, so allowing her to know and accept that my experience would be different from hers and that she doesn't have to match my emotional experience with the loss of her father, that she doesn't have to expect anything of herself, that I don't expect anything of her, and that it's okay to be. However, she is with it at the time of the loss and going forward because I don't know what her life will hold in terms of how she integrates this into her world, into her emotional experience. I don't know how it's going to impact her, and I just want her to know that whatever it is that she needs, she has access to the support that I can provide and that others can provide, and that it's always okay to let that experience be a part of who she is, and that it can shape her, but it doesn't have to overwhelm her. Dr. Bob: It's beautiful. Elizabeth: Thank you. Dr. Bob: You said something I wanted to touch on a little bit, in that people tend to shy away from the subject. And I see this all the time after someone dies, I think especially when it's someone younger or it's unexpected, sudden, is that the people around who might be very well-meaning who would want to provide comfort are afraid that because they don't know what to say, they don't want to make things worse. They don't want to say something that will be offensive or painful. So they probably instead don't say anything, don't call. That discomfort creates this distance. Do you have thoughts about how people ... because not so many people ... Like you said, it's rare for somebody to experience a sudden traumatic loss in their own life, but it's not as rare for people to know somebody who they care about who is in this position. So can we try to provide some guidance for people who are wanting the comfort or connect with someone who's had a loss? Elizabeth: Yeah. I would say that there are no words that make sense at that time, and to have the expectation that there's the right thing to say or that something you can do will make it better will solve the problem or somehow fix something is an unrealistic expectation. I think that death is such a part of life that it can't be ignored, and being willing to be simply present with people as they experience loss and grieve that loss at the time of the loss and ongoing because it becomes a part of their life, is the most you can offer. I don't think that there is anything that a person should do to help support someone other than just be there for them and with them. Dr. Bob: Yeah, I mean, I agree. I think that there are ... It's a challenge because you don't want to push yourself on somebody, and I know when people say--they're very well-meaning--"Call me if there's anything I can do if there's anything you need." But in that situation, most people aren't going to call on people other than a select few and say, "Oh, I need someone to be with me," or, "I need meals prepared because I can't function enough to cook for my family." Elizabeth: And I think that's a factor of our society's unwillingness to be comfortable with death. It's not considered acceptable to be in deep sorrow, and to need support, and to reach out to a friend or a loved one. I've heard a lot of people, especially spouses, share that their family members, after a certain number of months or years say, "It's time to move on," and that, to me, doesn't make any sense. If someone needs support around grief and loss, it could be at any time. It could be immediately after the death. It could be months later. It could be years later, to be available to offer a cup of tea, to just show up with a small gift, to send flowers to let them know you're thinking about them. I think small gestures that aren't intrusive but are thoughtful can make a really big difference. And those small gestures will let someone know more than just saying, "Call me if you need anything. I'm really here with you. I'm thinking about you." And it opens a door that people might not realize is even there." Dr. Bob: At the time of this recording we're coming up towards the holidays, and I'm wondering if you have thoughts about ... We're talking about children. We were focusing a bit on children, and there are a lot of children who are facing their first Christmas, their first Hanukkah, their first New Year's without somebody. It could be a grandparent. It could be a parent. It could be a sibling. You have anything you'd like to share about how to support the families, especially children through that, those holiday times after a loss? Elizabeth: I'm getting a little emotional as I'm remembering our first holidays without Natalia's father. Something that we've done that she has expressed to me has been really helpful is finding different ways of memorializing him and making him a part of new traditions. So we still have a stocking for him on the fire place. We have made crafts, little ornaments for the Christmas tree that she and I made together in remembrance of him. We make sure to spend holiday time with his family who is still very much our family and to really include him in the things that we do either through memories, or through creating small things that we can carry with us, or through creating new traditions that he can be a part of. And since his passing, we have found new family members and welcomed other people into our world, and I think that it would be really interesting to get their perspective on this, but they have been very open to him being a part of our traditions and our family, and I think that it can be maybe hard to balance the loss of a loved one with the integration of new loved ones. And it's a different kind of blended family. But, again, I think that open communication is the thing that has really made a difference for us, being willing to openly share our love for someone who is gone and at the same time share love for people who are here and know that they're not mutually exclusive, and know that we can all be a family together, and offering that knowledge and experience to my daughter, who has to learn to live with both the loss of her past and the future that awaits her. Dr. Bob: And partly the future that in some ways was created through that loss. Elizabeth: Yes. Dr. Bob: So we talk about silver linings. And after the death of someone who's young and vital, who we expected to be part of our life for decades to come, it's hard to think about silver linings in those circumstances, but sometimes we don't know ultimately what the purpose of our life is. We don't know what the meaning, the reason for our sometimes premature departure. But I know that there are many instances where a death has resulted in new relationships developing and new understandings developing, which wouldn't have happened otherwise. And we don't get to decide whether ... You don't get to weigh the consequences of one versus the other, but we have to appreciate that there are these positive outcomes. And, like you said, you have to reconcile that because I would imagine especially children, they would never want to think that it's okay that this happened, that death occurred because this happened. That would be very I think hard for someone to reconcile. But we have to somehow be okay with all of that, right? We have to learn to be okay with all of it. Elizabeth: Yeah. I at one point in my life received a label of the queen of the silver lining because of my [infallible 00:24:53] optimism. I think that that is not mutually exclusive with the experience of sorrow and teaching my daughter that we can be both happy with the life that we've built since the loss and also deeply wounded by the loss are not mutually exclusive, are something that we can reconcile and that we can live with simultaneously. It's difficult, and it takes a long time I think to bring those things together, to integrate them, but I think that like anything in life, there's a gray area that balances the life and the death, the light and the dark. And being able to live with that unknown, the in-between, I think that's a goal that I've encountered since losing someone that I loved. Dr. Bob: And I'm sure that that understanding has been extremely valuable for others that you've been able to counsel and engage with in your capacity as a social worker, as a friend. I do, the other thing that you mentioned that I completely, wholeheartedly agree with is the value of communication. It think the families, the people who have the most difficulty in struggle and have the most negative impact throughout their lives are those who can't communicate, who don't know how to communicate when they're in this, reeling through these circumstances that they didn't bring on, that they have no control over. Communication is so critical. Elizabeth: Absolutely, and I think that noticing that has been a huge part of what has inspired me to become an advocate for education in this field and for working to create those conversations and allow people to be a little bit more comfortable with acknowledging and experiencing the difficulty and the discomfort that surrounds conversations about life and death. Dr. Bob: Wow, a little light morning conversation topic, but this is really valuable. This is wonderful, and I think that there's so much more than we could tap into and touch on. And I'm going to ask if you're willing to come back and have an additional conversation or two with me? Elizabeth: I would be honored. Dr. Bob: Yeah, I think we have a lot more to discuss. We've been together and with some patients and families, and there will be many other opportunities for us to have these Life and Death Conversations, which I hope others will find some to be interesting and valuable. So thank you for sitting with me and having this conversation today. It was really informative, and really I'm sure valuable for many of our listeners. Elizabeth: Thank you for the invitation. Dr. Bob: Alright. Signing off now. We'll be back and chatting with you again soon.  

Our guest is Lael Duncan from the Coalition for Compassionate Care. Second part of the series regarding the End of Life Option Act in California. Website: coalitionccc.org Guests: Lael Duncan; MD - Medical Director of Consulting Services at Coalition for Compassionate Care of California --- Follow us on Twitter: @AgingByThe https://twitter.com/CoalitionCCC Bay Catch the latest episodes and subscribe to “Aging By The Bay” on iTunes, Google Play, Stitcher, and TuneIn. For more information about “Aging By The Bay” visit us at http://www.agingbythebay.com/about-us.html Related episodes can be found at http://www.agingbythebay.com/shows.html. Music Credit: "(Sittin' On) The Dock of The Bay" Performed by Otis Redding used with permission Contact: info@AgingByTheBay.com Web: www.agingbythebay.com Sponsor: ComForCare

Our guest is Lael Duncan from the Coalition for Compassionate Care of California. This is part 1 of a 2 part series discussing the End of Life Option Act in California. Website: coalitionccc.org Guests: Lael Duncan; MD - Medical Director of Consulting Services at Coalition for Compassionate Care of California --- Follow us on Twitter: @AgingByThe https://twitter.com/CoalitionCCC Bay Catch the latest episodes and subscribe to “Aging By The Bay” on iTunes, Google Play, Stitcher, and TuneIn. For more information about “Aging By The Bay” visit us at http://www.agingbythebay.com/about-us.html Related episodes can be found at http://www.agingbythebay.com/shows.html. Music Credit: "(Sittin' On) The Dock of The Bay" Performed by Otis Redding used with permission Contact: info@AgingByTheBay.com Web: www.agingbythebay.com Sponsor: ComForCare

Matt Whittaker, California State Director of Compassion and Choices, (the organization that led the yearlong campaign to pass the law) talks about the End Of Life Option Act that is currently being implemented in the state. Please listen to this 2-part podcast as Matt dispels common myths about the law and offers amazing educational resources for anyone who wants to learn or is considering the End Of Life Option.

Matt Whittaker, California State Director of Compassion and Choices, (the organization that led the yearlong campaign to pass the law) talks about the End Of Life Option Act that is currently being implemented in the state. Please listen to this 2-part podcast as Matt dispels common myths about the law and offers amazing educational resources for anyone who wants to learn or is considering the End Of Life Option.

Episode 4 details California's newly enacted End of Life Option Act. The Act went into effect June 9, 2016.

The success of Oregon’s Death with Dignity Act – at 18 years, the world’s longest-running law of this kind – puts two things into sharp relief. Firstly, the increasingly desperate attempts of opponents to discredit it. Secondly, the truth they don’t want you to see – that this law works, and exactly as intended. How that law came to pass in such a religiously conservative country stands as a masterclass in public policy, and one that set the template other US states have since followed. Brittany Maynard: 'I would like all Americans to have access to the same healthcare rights' — Source: YouTube The most significant of these was California, which in 2015 adopted Oregon’s law – thanks in no small part to a woman named Brittany Maynard. Brittany was just 29, and dying of brain cancer, when she left her home in California to go and live in Oregon, where the law offered her a choice about how she died. Her decision to use her dying days to campaign publicly for a similar law in California made her a household name, with her videos attracting over 16 million views on YouTube. As he signed California’s End of Life Option Act into law, Governor Jerry Brown – a Catholic – said: ‘I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.’ 'I think we do a much better job because of this law. It’s done exactly what it’s supposed to, and more.' Leigh Dolin, former president of the Oregon Medical Association Please note: this podcast is not about suicide. If you are interested in increasing your understanding of suicide and how to support someone experiencing suicidal ideation, visit the Conversations Matter or beyondblue websites.If you (or someone you know) require immediate assistance, contact one of the following 24/7 crisis support services: Lifeline (13 11 14), Suicide Call Back Service (1300 659 467), MensLine (1300 78 99 78), beyondblue (1300 22 4636), Kids Helpline (1800 55 1800) or eheadspace (1800 650 890). Hear more Embed player Listen Better Off Dead: Interview with Peg Sandeen Peg Sandeen is the executive director of the Death With Dignity National Center in Portland, Oregon. Here, she describes how Oregon’s Death with Dignity Act works, and the campaign to take it to other states in America. Know more Article: 'Twenty Years of Living with the Oregon Death with Dignity Act', by Eli Stutsman – GP Solo vol. 30 no. 4, 2013 Report: 'Oregon's Death with Dignity Act – 2014' – Oregon Public Health Division, 2015 Radio: 'California: Euthanasia' – The Law Report, ABC RN, 27 October 2015 Video: 'Brittany Maynard Legislative Testimony' – Brittany Maynard/CompassionChoices (YouTube), 31 March 2015 Article: 'Terminally Ill Woman Brittany Maynard Has Ended Her Own Life', by Nicole Weisensee Egan – People, 2 November 2014 Video: 'Brittany Maynard's mother: Help me carry out her legacy' – The Telegraph (YouTube), 22 January 2015 Article: 'California's governor has signed a bill legalising doctor-assisted dying' – Economist, 6 October 2015 In this episode Eli Stutsman Derek Humphry Leigh Dolin Kevin Yuill Alex Schadenberg Nancy Elliott Catherine Glenn Foster Katrina Hedberg Daniel E. Lee Our theme music was composed by Zig Zag Lane for Zapruder's Other Films, and edited by Jon Tjhia. Music used in this episode includes 'Haust' (Ólafur Arnalds), 'Dead Radio' (Rowland S. Howard), 'The Puritan' (This Will Destroy You), 'Petiatil Cx Htdui' (Aphex Twin), 'LSD' (ASAP Rocky), 'I Might be Wrong' (Radiohead), 'Between Stones' (Blue Dot Sessions) and 'Forty-Eight Angels' (Paul Kelly). Your stories If you're suffering, or someone you love has died badly – in a hospital, in palliative care, in a nursing home, or at home – add your voice and tell your story here. Further information Better Off Dead is produced by Thought Fox and the Wheeler Centre. Executive producers Andrew Denton and Michael Williams. Producer and researcher Bronwen Reid. For Better Off Dead, the Wheeler Centre team includes Director Michael Williams, Head of Programming Emily Sexton, Head of Marketing and Communications Emily Harms, Projects Producer Amita Kirpalani and Digital Manager Jon Tjhia. Editing, sound design and mix on this episode is by Martin Peralta. Additional editing by Jon Tjhia. Thank you Thanks to Paul Kelly and Sony ATV for the use of his song ‘Forty Eight Angels’. The series Subscribe in iTunes, or your favourite podcast app. #betteroffdeadpod Better Off Dead is produced by Thought Fox in partnership with the Wheeler Centre. It is written and created by Andrew Denton for Thought Fox.

In 2015 California passed the End Of Life Option Act. The aid in dying legislation allows 38 million citizens in California to now have access to medical aid in dying or what is referred to as “death with dignity”www.compassionandchoices.org