Transcripts For CSPAN2 Diane Rehm When My Time Comes 20240713

I have the invents manager at politics and prose thank you for coming out tonight especially for supporting the independentic bookstore like politics and prose. [applause] and the nonprofit your attendance at events like this is vital and we were not be here without you. We want you to know how much we appreciate you and your choices. I am so excited to introduce tonights event how much i admire diane ream she began her career in 1973 as a volunteer and has grown into the producer and the dc icon we all know today she is the author of several books including finding my voice and on my own and of course the book you are here for tonight, when my time comes that addresses the right to die movement with terminally ill patients physicians and spouses and representatives who vigorously oppose the movement she has a broad range of people who are personally linked to the medical aid and dying the book presents the argument for and against the current debates around the country for those to put an end to their suffering. Moderating tonights event to chair the board of Public Access corporation of washington dc on washington dc since 1987 so before we welcome our speakers to the stage we would like to treat you to a short trailer of the documentary that is also called when my time comes to correspond with the book. Enjoy. Death . What options do i have as to what the my death will be like . People like you and me have been considering questions like these for as long as thereve been a human being. Today some of us are willing to speak openly about such today we will speak openly about such things but many of us are not. And the culture that seems to hide from mortality. And it is complicated for people in that willingness to be vulnerable. Conversations are not about dying but the quality of our lives. Everybodys ideal is to die quickly not with the existential suffering. 25 percent of people who die of chronic illness die with uncontrolled pain. One of the scariest things is that you have no control. Medical aid and dying is the treatment who has exhausted all hope to help them die in comfort and in peace. Is somebody thinks about dying its a not casual. It is a very difficult debate for a lot of people. I dont know if i would use it but i would like to know i have a choice. Between the individual and the doctor. Most people are not talking about death. They push it out of their minds. I believe we must talk about it. And thinking about what i would like to have at the end of my life is very important and sharing my wishes with my family and my friends and my physician we are a great comfort for when my time comes. [applause] dianes husband, thank you for joining us. Also the presence of the manager of wamu jj. [applause] and wamu Staff Members are also here sprinkled among us, they have the support system that diane and i have come to rely on over the years. We would like to thank them. Would you care to stand. [applause] i have known diane rehm for about 30 years, i knew her before i started work in a wamu, i was hosting a talkshow and diane and i were time to time guest on each other show. And she was one of the people who strongly encouraged me, demanded. Then they come today wamu. In the person that i knew before i came to wamu, i considered a very genteel woman, when i came in 1998 i found that diane was indeed a genteel woman that made a solid steel. Because in that year, 1998 diane started struggling with cosmetic dystonia, which caused her to lose her voice. , you would think that anybody who made a living by talking, stricken with prismatic dystonia would be ending their career, not this woman of steel. She fought it she underwent four years very painful treatment that caused her to be off the air for short periods of time but then she always came back. And she stayed coming back. Until her absence were less and less frequent and they were less and less long, she fought through them. And then her new husband got parkinsons disease. And in this book when my time comes, diane details the pain and suffering he undertook and i assume that experience is what started her on this journey. It turned out i was wrong so diane, start by telling us about your mother. Good evening it is so wonderful to see you all and kojo, thank you so much for being here. My journey began when i was much younger, when i was 19 actually i was 16 when the doctors told me that my mother was dying. The 16yearold does not quite grasp that reality. So i did a lot of praying and a lot of looking to the stars and wondering what is death going to be. Well, for my mother who was 49 when she died and i was 19 it was a great deal of suffering, she begged to die, she begged to die in her hospital bed being drained over and over and over again of fluid caused by were not sure what, whether liver, cancer, cirrhosis of the liver which the doctors all ensured her that it mustve been because she was an alcoholic. And i assure you, she had two drinks a year at christmas and on new years a shot of whiskey with my father. As she lay in the bed, having been drained once again, of fluid that made her look as though she were 11 months pregnant, she begged to die and i can remember rubbing her feet and crying and saying i want to go before you do, i dont want you to die. And then on new years eve of that year, my then husband and i went to Georgetown Hospital at about 10 00 oclock at night before we were supposed to go to a new years eve party, i did not want to go, i did not feel as though i wanted to go but i went. First, to the hospital and when i saw the doctor who was her doctor, i said to him he said, have you seen your mother. And i said, we went into see her but she was sound asleep and i did not want to wake her and he said, i want you to go back in that room, i want you to let her know that you are here. I said but doctor, she does not sleep well, i do not want to wake her. He said go in and wake her. The reels were up on her bed and i said mama, im here. And i think she was so out of it, she kind of waved me away. I think the doctor knew that she was going to die at night and therefore the next day, my husband and i having just moved into a new apartment had no telephone, his brother came knocking on the door saying you must get to the hospital, we raised their and iran across the parking lot, i got there 20 minutes too late. She was gone. And i think kojo, that began my really strong feelings that people should not have to suffer. You say you have a life long advocate a patient on me. , how come . I think, when the doctor told me that my mother was dying, i had gone in to see him, my dad had taken me and i had an ear infection. I could use some pretty choice words, but i will not. Believe me she can. [laughter] she punched through the infection in my ear and i screamed and after i calmed down i said to him, please tell me about my mother and he said she will be gone in 18 months. Just like that. And for me, that harsh way of speaking with a young person about lifeanddeath kind of turned me off to the way doctors assume godlike positions with their patients or the children. I think for me, it has been a lifelong strikeall to make sure that i speak up around doctors and say what is and what is not. And i certainly did. Did your activism on medical aid in dying flow naturally from your feelings on patient autonomy and did johns condition, john reams condition leads you to intensify . John, as kojo said, he died oof parkinsons, he died starvig himself and drinking no liquid for ten days. I watched him do that for ten days. He felt he had lost all dignity, he could no longer feed himself or bathe themselves or toilet himself and he said one day, i am ready to die. Andy called in the doctor a physician himself was on the phone from boston and he said john said im ready to die, doctor will you help me. At a nursing home in maryland, neither legally or morally or ethically can i help you die, the only thing you can do for yourself is to stop eating, drinking water, taking medication you can go a long time without food but within a short period the lack of water destroys the organs. And i watched for ten days as my husband of 54 years declined and showed on his face the never crying out showed on his face, the agony that that death caused for him. He died in 2014. In january of 2016 and his executive producer diane came to me saying that they had plans to do a documentary film on the right to die. And joe told me the other day, he was surprised at how readily i agreed to do it. Before we got to the elevator as he was leaving, i said i am in. I said for those three years we have worked together on this documentary film, three minutes of which. You seen the book just came our came out tomorrow and that is a result of our effort. A question you asked many others in this book, i will not ask you. What is your idea of a good death . Kojo, its a question that our director really wanted to ask each and every one of the more than 40 people, we interviewed around the country, via patients, doctors, priests or members of the clergy, what do you consider a good death . For myself, i would consider a good death one that is peaceful, painless, quiet, perhaps having a party beforehand. [laughter] , having lots of champagne. [laughter] having my husband, my children, my grandchildren, my dearest friends beside me, holding han hands, telling them each what they mean to me, that would be a good death. In order to make sure that you have a totem in the process, in order to make sure that there is absolutely no mistake made about your desires, you recruited your grandson. Tell us what you told ben to do. During the filming of the documentary which by the way will be shown on Public Television a year from now in the spring of 2021. Ben was using his cell phone and i had asked my daughter, his mother for permission to do this, i dont do anything without asking my daughter for her permission. If you ever had the experience of diane rehm asking your permission to do anything, you would understand it is not just an ask. Is very important with grandchildren and with children to ask permission and jenny granted it. I said, ben i would like to speak with you now, please take out her iphone as i was speaking with ben about my own desire, ben was being filmed by our director, photography dave and i told then exactly what i wanted, recorded for posterity but most especially for my two children, for my husband john, for my grandchildren, i wanted everybody to be aware, if i had either, and this is very controversial i know, i began showing signs of alzheimers, if i had an incurable illness, if i was diminishing in ways that i could never again enjoy the fullness of life, i wanted to go. And i wanted them to know that i would want to go and i read to ben a paragraph that i had read that and morrow lindbergh had read to her children, she had written it, she never actually read it, her daughter found the paragraph after and morrow lindbergh died and i quote that paragraph in the book because it was so meaningful to me saying if there is nothing that can be done, please end my life humanely. Please do not use extraordinary measures and please follow my wishes. What im hoping this book does and are documentary does, is to get people to talk about the most taboo subject in the world, death and dying. We are so afraid we are so afraid to talk about it and pretend it is not going to happen. I said in a Church Service in massachusetts were about 300 people were there, i said please, raise your hand if you plan not to die. [laughter] and there was exactly the same lowlevel chuckle. As though we all think its kind of funny. But some people think, especially young people think they will live forever. John rehm and i because of my family history, my father died 11 months after my mother did. My mother died at 49 years old. And my father died 11 months later. Of a broken heart. Johns father mother each committed suicide. My motherinlaw at 92, my fatherinlaw at 72. So death was something that was part of our dialogue. And i believe that in this day and age, death should be something that we all talk about because the baby boomers are reaching that age where their parents are dying. We think about the idea that our children are afraid to talk with us about what we want, why dont we raise what it is what we want. What i hope this will do is to get people talking. The book certainly did it to me. Because even though my wife and i already have wills and have living wills and those living wills indicated that we do not want to be recess attainted, after reading this book i realize one has to do more than that. Much more, one has to be very specific about what one wants in the situation and one has to have a conversation with ones Family Members about that and in your case you made ben record this conversation so it will last forever. But its just an ongoing part of diane programming me for the rest of my life. [laughter] lets talk about some of the people who made the decision. Lets start what was close to home for you, mary klein who had missed asked ovarian cancer, they lived close to your old neighborhood. They do or did indeed, mary klein was so active, and her partners in wifes eyes such a strong marvelous, talented person and carried on her life in such a fabulous way when she discovered she had ovarian cancer, she did in fact go through numerous treatments, many radiation and chemotherapy treatments until the doctor sa said, there is really nothing we can do and mary at that time because there was no right to die in d. C. , she and her partner went to work with mary che. Who is the council member. To bring the idea to the board. Now mary, as soon as she got elected wanted to bring it to the four but had been persuaded by other Council Members to hold off for a bit but mary became impatient and mary klein became the perfect advocate to come forward to talk about her own illness and the fact that she did not want to suffer, that she had done everything that she could to try to stay alive but knew that eventually and shortly she was going to die and did not want to die suffering. And finally the district of Columbia City Council Voted so that now d. C. Has a medical aid in dying law, when we began this process in 2016, just three years ago, there were three states at the time that head edible aid in dying, now because people like mary klein and britney minard in california who had to move to oregon to obtain medical aid in dying, now there are nine states plus the district of columbia which has medical aid in dying, i feel very fortunate that people like mary klein and mary che really made this an issue, i pray that maryland, virginia, new york, connecticut and other states will follow suit before long. Thank you. The district and columbia got a medical aid in dying law in the books, Problem Solved for mary klein. Wrong. Then you have to find a physician who is willing to do it. Tell them about her odyssey and that decline. Mary klein looked and looked and looked and finally found a physician who was willing who to work with her. This physician, she is now my physician i wonder why. Because she believes in medical aid in dying, i have now turned to her but there are very few physicians, initially d. C. Said you have to have a registry and you have to list your name as a physician willing to carry out medical aid in dying and very few physicians were willing to put their name out there and public. But now we have a few, very few in the medication is very, very difficult to get a hold of was taken off the market asked me why and i cannot answer it, one was taken off the market and a number of pharmacies began to create their own potions and now you have to really find it through a physician, it is not easy, i am hoping that that process will become easier as time goes on, after all oregon has had its law in place for 22 years and of the number of people who have applied for medical aid in dying and received the medication, only two thirds of those people have actually used it, one third had the medication and had chosen not to use it. There has not been a single case brought of any sort of coercion or pressure or illegal activity on anyones part. Now lets talk about those who are against it. Thats where i was just getting. In the case of the d. C. Legislation, your neighbor, someone who lives in the same building you lived in, some lucky person testified in favor and she was dismayed that all the physicians who testified were against it. And you had a conversation with mary kleins physician which is now your physician and she told you about conversations she has had with her colleagues and how torn they are about to but why did all these physicians who testified here oppose it. For a number of reasons, i think many go back to the idea that physicians should do no harm. Now let us begin to wonder whos harm exist does it exist in the mind and heart of the patient who should receive one more treatment that does no good. Those that exist in the mind of the doctor who feels lets try this one more thing. There is a wheel that patients that patients can get onto especially those suffering from serious cancer diagnoses. Who try one treatment after another. A church most especially the Roman Catholic church. You testified in massachusetts in favor of this bill. In maryland as well. In the case of massachusetts, you also talked with a Catholic Priest in massachusetts. One of the longer conversations in the book as a matter of fact, what rational for the churches position . I must say to a certain extent, i agree with the churches position that if you believe that god should be the only decider, i support you 100 . If you as a patient believe you should have every single treatment that medical science can offer you and you want that, i support you 100 . In the same way, i believe that at some point, i would want to make my own decision that enough is enough. I want to be supported and many of those doctors continued to believe that the hippocratic oath says to them that they must do no harm and they interpret that to mean i may not take part in ending you alls life but my role is to keep the patient alive, younger physicians are now learning or in more about do no harm and what that actually means. I will ask members of the audience if you have questions or comments to approach the two microphones in the room and we will shortly get to your questions and comments. I have a few more questions for diane because the husband of Brittany Maynard who had a brain tumor he is a lifelong catholic, he said hes comfortable with britneys decision to seek medical aid in dying, she has to go to oregon and moved to california to oregon and how about your own faith, how do you reconcile for your strong support and medical aid in dying with your own faith. I am a strong believer in god. And i have been since i was a very young child and i believed in miracles in my life. Actually, i will not go into it, i have believed i have seen some miracles so that my belief in god is strong in my own belief is that god would not want to see me suffer unnecessarily a prolonged illness. I reconcile that very easily and i receive holy communion, my i kneel and pray and i pray and thanks for lots of things. For my life, my children, trees, flowers, my god is there with me. And i know that. To questions, tells about the organization compassion and choices. I think its a wonderful organization, compassion and choices is supporting us in this documentary film because where they are looking for the same final issue to support and that is choice in dying. Choice at the end, medical aid in dying for those who want it. Never for anyone does not want to, no one approaches compassion and choices without wanting control at the end of ones life. For me the most intriguing thing of all, what are death cafe. Death cafes are happening around the country, i regard this is a huge death i was thinking that. [laughter] this is a huge death cafe. In fact what happened with death cafe, friends, neighbors, members of families come together that sit at tables and eat and talk with each other about what they want at the end of life. In indianapolis, iran into a group that has gathered as a neighborhood because they want their neighbors to know, not just their Family Members, not just their doctors but also their neighbors to know exactly what they want perhaps they do not want 911 to be called. I do not want 911 to be called if i had a stroke or a major heart attack. I do not want that, as a write in the book about an 81yearold woman who was taken to the hospital who had all of her documents own order same do not resuscitate who found herself in the emergency room recess attainted and then in the icu woke up absolutely furious. That she had not been allowed to die. I do not want that to happen. [laughter] since you just requested him. Let the record show you have all now participated in the death cafe. [laughter] good evening and thank you for your time. I am a care and cardiologist. I was in Northern Virginia and i will share to engage in this conversation and ill make this required reading for 100 physicians under my care. [applause] i have two questions. Which come up often for physicians, one broadly speaking, what is your view of Hospice Services and how do they enter into this conversation and number two, what advice to give which i deal with on a daily basis, families who disagree with the patient about their position let me address the first question first and that is hospice care, i support both, however, i am in the film and you will see physicians acknowledging the pali out of care cannot reach every kind of pain and for those doctors who say we can always keep the pain from getting to you, i am sorry. I just do not accept that from what i have heard from physicians. I know you can put someone in enough of a shadow state that he or she will die sleeping, i do not want that for myself. I want to be present, i want to be able to say goodbye and they want to be able to do so without pain. Family members who do not agree. That is why i am saying to kojo and everyone out there, it is so necessary to have bu this conversation before you reach the last hospital bed. I mean, how many families have a loved one taken to hospital and they say, oh my god what do we do now. Do we pull the plug, do we let her stay there with a ventilat ventilator, does it just go on and on . I dont know what you as a doctor, an individual dr. Might say, i did ask one doctor in the film who is in california and i said, do you ever say to the patient, i am sorry, we cannot do anything more . And she said never. She said we can always use care or hospice or whatever which is not an honest answer. It is not an honest answer. In doctors and i believe younger ones are reaching this point will be more honest with their patients, thats what i would ask. Your turns sir. That you both for this conversation my name is nathan and im a College Student in the washington, d. C. Area. I very much look forward to reading the book and ive been going through the book i found a very interesting to read the different interviews that you did for the book of people who hold different opinions, on the topic, my question is what would you say are the meaningful aspects of the interview that you conducted . I think the ones that will we the most moving and meaningful were two, one at the start of the book with the woman who had medical aid in dying, who had the bracketing dying of breast cancer, she had had treatment after treatment. Who said i really love to live until i am 90 but i know that is not going to be. I am ready whenever it comes but i do not want to leave my children and at the same time i dont want my children to see me suffer. I have seen my own and in mother suffer, i dont want them to see me suffer. The other most moving interview for me was with my own high school sweetheart. Who had Prostate Cancer that had spread to his entire skeletal system. He too lived in a state in colorado where medical aid in dying is legal. He had the medication and in the end he did not use it. He used humor as he thought about his own death. He and his wife talk so honestly about what was going to happen and in the end he died before we finished our film. It was very meaningful. Thank you. Thank you. Thank you so much for answering questions. , i am not really familiar with all the loss of this might be a new topic. In terms of laws that require Self Administration of the medicine that you can receive, i was wondering what your thoughts are on the pros and cons and how you feel about it. The fact of the matter is, under the current law, every law in the nine states plus d. C. , the individual who request the medication who is dying must be able to self medicate. No one, no one is supposed to be able to help with that. Mary chait told us some who are part of the disabled community are viewed against that because they might not be able to sell the minister, oregon is trying to deal with that and there are some other messages being talked about that had not been included yet in any law. But the safeguard in yet a preventive for those who may be so physically disabled, the als patient for example, there are some who are experimenting with the idea of at least talking about the idea of administering the medication regularly. Tough situation. Thank you very much. I just want to say, i love seeing you to live and hearing your voices. [applause] thank you. Putting aside my work policy hat in the system that supports this treating a system, i want to talk personally, is that funny, not funny, my siblings and i sort of laugh when my dad says i want to give you an update on my endoflife care, where i want to go, were like yes, we know, we know your plan and it comes from his own experience, his mother died from alzheimers for 20 years. There is that side and my mom does it and going to what you were mentioning. Als, i have a friend who is young and has als and i learned a lot from my conversations from him because they benefited from conversations my dad and his siblings of being open because of their experience of their mother and alzheimers. But young people i havent had many people to speak with who have experienced death or leading to death. And david will just say he cannot find the support that he needs, when you try to find somebody to help you deal with death is towar to find you so sn and were als or these other death situations the support does not seem to be there to accept really heading based on that you are going to die and i wondered if you have ever heard that on all about people who are younger and not having a supporter, it seems difficult. And like compassion and choices help . I think so. Had you or your friends approached the organization, compassion and choices. We will look into it. I will see them in a couple of weeks. I will see him in a couple weeks and let him know about the organization. Hes done a lot of research and its been hard to find a therapist. It is very hard, i think it is very difficult to find the right physicians but i would direct you to compassion and choices, i know that nobody here in d. C. And mary chase said, she felt it would be a step too far to go to try to include alzheimers patients or als patients within the bill, a step too far, we must go one step at a time. So please, urge your friend to contact compassion and choices and go from there. I was looking around, the death cafe in arlington, i think thats only one that is close in this region and where . Theres one in alexandria. Great. Lots of places, and virginia, good. Thank you so much for taking on. Getting people to think and then talk about it. Because you are 100 correct, none of us is getting off of this earth in this body. So the question of how do you address these issues is incredibly important, i would like to suggest that although it seems complicated to deal with mental disability, cognitive decline, alzheimers, dementia, i would argue, number one the brain is the single most important organ in the human body and the only organ that distinguishes us from all of their life on earth. So when you lose your ability to recognize yourself to think logically, you are dead. Your eyes may be open, your heart may be beating, so what we do right now is we take people in that condition and we put them in a warehouse to go through what you went through and i cant imagine how you are with your husband, even in ten days, the pain on the people that love the person is much worse than the pain on the person itself. I do understand exactly what you are saying, i do go back to that point of saying to you that this legislative piece is going to happen one step at a time. And we are just at the beginning, i think joe fab and diane had this idea of creating this documentary at just the right time because all of us are beginning to think so hard about these things. The middle part will come. Thank you. Thank you very much. Thank you, im a social worker in d. C. And work with older adults and i have the privilege about a year ago to walk someone through the process of accessing medical aid and thank you for all your hard work and advocacy. It was truly lifechanging for this person in their family. For me both freshly and personally, one thing i did notice in the family also brought to my attention, many times although this is legal, the infrastructure does not necessarily exist for someone to access the law. And there were a couple happy coincidences that allow this person to access the law but theres a lot of things left up to chance in the professional it makes me uncomfortable, if somebody approaches me too help me do this, i cannot be sure that we can be successful again. It is a drug company who have put a clenched fist around this medication and it has become very, very difficult to get it and as i said second of all i went down hes got down to 50 and went up to two, 3000 and now longer available at all. So now these compounding pharmacies have gotten into it and it takes a lot of work to get that drug when you need it. You have got to find a doctor who will fight for you and get that drug. Thank you. We only have about five minutes left, i will ask the remaining member of the audience to keep your questions or comments as brief as possible. Are subject t subject to onl alone. A lot of what we believe is basically you should be a good person and have control over your own body to not get into much greater details. Do you have a question . [laughter] yes, my question is what is your take on leveraging religious liberty to emphasize the capability to have the right to die, to say it is my religious beliefs i have the right to die the way that i want to . I dont know if i have that kind of religious authority. [laughter] im sure what you are asking me im an episcopalian, i believe in god. I was baptized. I pray. My religion is consistent with my beliefs that i have the right to say when my life should end. We do have to move on to the next person. Sorry, we are running out of time very quickly. My personal belief based on the experience is we should have the right to decide for ourselves, however im wondering what they would say to somebody concerned about the fact that most people working age are covered by managed Care Insurance and a growing percentage of Medicare Beneficiaries are covered by managed care. Its a lot cheaper for people to buy them to have Palliative Care and to go on living. So, how would you respond to somebody that would be concerned about financial incentive to encourage people to opt for a quick death versus on needing more care . Its got to be up to each of us to make that decision. All of our decisions every day i make decisions based on what i can and cannot do, what i can afford to do and cannot afford to do. Its maybe the same decisions we make as we reach the end of life. I am saying that i want each of us to decide for ourselves and that decision may include what do i want it now, what can i do now and what is realistic for me now. I hope that those decisions do not come out of monetary concerns. Im sure some do. Most come out of pain and suffering. I highly recommend to people that are looking for a place to discuss endoflife. What did you want your obituary to say . They said would you be happy if this is wha what is said andi said it would be ecstatic. But i learned something i didnt understand about the dc law. I felt that it was a right to die but it is not the right to die. You have to have two doctors certify. Its really hard so lets say you are in a situation that you are ready to go. You have no right to die under that. You have to have the doctors certify in writing 15 days apart that you are going to die within six months. And theres only certain things you are going to die of. That is not quite true. How you should be suffering from the determination from doctors that whatever the disease is that yo they are within six mons of death and you must be able to say that without anyone else around. No relative, daughter, son, uncle waiting for all your mon money. And as a good safeguard it makes sense so no one can be taken advantage of. It is medical aid in dying that we must meet certain criteria, and i understand. Thank you. They are just about out of time. My question was how would you explain this to a Family Member that might be afraid of their own mortality . A number of people have asked this. This may sound ridiculous whether you are in older person speaking to the younger one or a younger one speaking to an older one, i would say ive been thinking a lot about what i want at the end of life and Start Talking about yourselves and what it is youve been thinking of and what it is that you want him to go little by little, and im not saying its going to happen in one conversation. You may need to do it little by little to advance the conversation. I hope that helps. Thank you. [applause] from the first book finding my voice to this book, when my time comes, diane has allowed us to enter into her life and use it as a public service. And for that, we remain eternally grateful. [applause] [applause] diane will be on stage for a while for those of you that have books to be