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For many years esteemed radio host and author Diane Rehm has been a fierce advocate for physician aid in dying.
Now, in her new book When My Time Comes, Rehm addresses one of the toughest subjects for families to talk about — death.
Through personal stories about her mother’s death and her late husband’s battle with Parkinson’s Disease, Rehm examines patient autonomy, personal choice and physician aid in dying. She also talks with clergy, lawmakers, doctors and close friends about their views on legalizing life ending medicines.
Produced by Ashley Lisenby
- Diane Rehm Radio and Podcast Host; Author, "When My Time Comes"; @drshow
KOJO NNAMDIYou're tuned in to The Kojo Nnamdi Show on WAMU 88.5, welcome. Later in the broadcast we'll meet an end of life doula, who facilitates death cafes in this region to help people talk about dying. And we'll hear from right to die opponents, who say new legislative proposals that give people the option to take prescribed medicine to die put those with disabilities and people of color at risk.
KOJO NNAMDIBut first, for many years public radio personality and author Diane Rehm has been a fierce advocate for medical aid in dying. Her husband, the late John Rehm died in 2014 after years of living with Parkinson's disease. Not wanting to continue living with pain caused by the illness he requested a doctor provide assistance in dying. Medical aid in dying is, however, illegal in Maryland and where the Rehms lived. So John was denied life ending medicine and decided to end his suffering by refusing food and water until his death 10 days later.
KOJO NNAMDIJoining me now to discuss her new book "When My Time Comes," which shares John Rehms story as well as the perspective of spouses, lawmakers, clergy, and doctor on physician aid in dying is Diane Rehm. She is the host of the podcast "On My Mind" and author of the book "When My Time Comes" and host of the documentary of the same name. Diane Rehm, welcome.
DIANE REHMKojo, it's great to be with you.
NNAMDIDiane, you've been very outspoken about your support for both patient autonomy and right to die laws over the years. Why write this book now?
REHMWell, the book is actually the outcome of the documentary that I've been working on since 2016, the documentary by the same name "When My Time Comes." When Director Joe Fab and Executive Producer Diane Naughton came to me early in 2016 asking whether I'd be interested in working on this, you know, I really did not hesitate. As you said, because of my own family history, my husband's family history and my husband -- my late husband himself, I really have felt very strongly that each one of us deserves to determine when and how we die.
REHMThe laws in this country are absolutely wonderful in the states, nine thereof, which allow medical aid in dying. And you and I are fortunate, because it's allowed here in Washington. But I decided that taking on this project before the documentary and for the book would allow more and more people to do to exactly as you suggested in your opening, begin the conversation. That's my hope with this book.
NNAMDIThe documentary "When My Time Comes" will be debuting on public television stations nationwide in the spring of 2021. Many of the people you interviewed for your book believe there's a culture of fear around death in America. People just don't talk about it as much as they should. First, why is it important that we talk about death and our wishes for the end of our life?
REHMBecause so many people reach that point of ending where families, relatives don't know what that person wants. So it's really important to begin that conversation. Of course, I am in my 80s and I have talked with my children as John Rehm and I both did. And I believe that eventually they will talk with their children about what they want. It's so important, because many people get to those last days and perhaps by total surprise their relative ends up in the hospital and they have not discussed with that relative be it a parent or a brother or a sister what it is they want at the end of life.
REHMDo they want God to be the only decider? Do they want everything that medical science can provide? Or do they want to go when they say, I've had enough. I'm ready to go, as John Rehm did.
NNAMDIWe live in a culture in which the medical profession is able to postpone death for a very long time much longer than it was decades ago. And as a result people don't seem to be willing to discuss it as much. Some people seem to think they may be able to postpone it indefinitely. Inevitably it will happen. So how do we make conversations about death easy?
REHMIt's not easy, Kojo. It's a difficult subject to talk about, and I'm fully aware of that. When my own mother was dying my mother and father did not utter a word. My sister and I had no idea she was really really dying. We thought she'd make another and another and another trip to the hospital, but there was no conversation about what she would want at the end of life. Except she said me to, I want to die. I don't want any more treatments. I really want to die. If you can open that conversation with a parent, with a loved one by perhaps starting a conversation by saying what you would like to have at the end of life. It's going to take many conversations not just one. Little by little by little to open that conversation so you really do understand what that person wants.
NNAMDIWe're talking with Diane Rehm. She's host of the podcast "On My Mind" and author of the book "When My Time Comes" and host of the documentary of the same name. Diane, in the book you share the story of Brittany Maynard, who chose to move from California to Oregon to have access to life ending medicine because of her terminal brain cancer. And her husband told you about their last day together, a date they chose. John Rehms' story is much different. He did not have the option to choose when he would die. But he made the effort to do that. He asked for medical aid in dying. What happened?
REHMHe was in a nursing home in the State of Maryland. And Maryland, of course, even to this day does not have the right to medical aid in dying. Though, last year in the House of Delegates it lost by one vote.
NNAMDIIt's coming up again in this current session.
REHMAnd we hope it's coming up again. And we hope that there will be enough delegates, who finally will recognize that it's not they who should be in charge of when we die, but that we ourselves should have that control. When John Rehm finally realized he could not have medication that would end his life he chose to stop eating, stop drinking, stop taking medication. It took 10 long days for him to die, and it was an excruciating 10 days for the entire family and most especially for John Rehm himself. So I hope Marylanders will get out there and urge their delegates to vote in favor of medical aid in dying as courageous city councilmembers did here in Washington.
NNAMDILet's go to the phones. Here is Yeta in Alexandria, Virginia. Yeta, you're on the air. Go ahead, please.
YETAHey, Kojo. So, yeah. I'm a huge fan of both. Hi, Diane. It's good to hear you back on the air.
YETAYou're welcome. So I lost both my parents to tragic disease. My dad was diagnosed with metastasized melanoma, bones and lungs, really painful. And my mom was third generation in row with Alzheimer's. And we live in Maryland and Virginia, and there was no help available for them in passing. And I have actually gone to the extent of writing into my living will that if it is legal and I were to contract Alzheimer's that I want to be able to leave with as much of my faculties intact or as many of my faculties intact as possible. And, you know, my mom was a really strong woman. And traveled the world and went to places at a time when, you know, people weren't traveling. And to see her diminish the way she was -- and I'm sure you can relate Diane, was just heartbreaking.
NNAMDIWhat was -- did you mother express what her desire was during that time?
YETANot during that time, because she was no longer who she was.
YETABut when her mother was dying of Alzheimer's, I mean, she made it absolutely clear that if that were ever to happen to her that she would want to, you know, exit stage left gracefully.
NNAMDIBut that never happened.
YETANo. It did not happen. Although there is a wink, wink, node, node when people go into hospice with the use of morphine that as the body is slowing down or breaking down the morphine can't be metabolized and it does sort of send people off, but that is not official. It's not done at a time were people might be able to make a conscious decision.
NNAMDIDecision themselves. I'd like to hear Diane comment on that.
REHMAnd certainly not for Alzheimer's, Kojo. Mary Cheh, one of the D.C. delegates -- D.C. councilmembers, who originated the medical aid in dying bill here in Washington told me that she felt -- and, of course, many others agree with her that right now Alzheimer's is a step too far. I totally support what your caller says about what she would want for herself or what her mother would want.
REHMIn other words, I have made a video with my grandson telling him to, of course, show this video to his mother, his father, his uncle, my son and his wife that should I begin to experience signs of Alzheimer's I would want to go before the depths of that devastating disease took hold. It is not legal anywhere. No doctor will prescribe medications for an Alzheimer's patient. I think some states are, again, precisely are thinking in those terms, but right now it's a step too far.
NNAMDIWe're not there yet. Got to take a short break. When we come back we will continue this conversation if you've called and quite a few of you have. I'm Kojo Nnamdi.
NNAMDIWelcome back. We're talking with Diane Rehm about her new documentary and book "When My Time Comes." She is host of the podcast "On My Mind." And we're taking your calls at 800-433-8850. Let's go to Sharon in Silver Spring, Maryland. Sharon, your turn.
SHARONThank you so much, Kojo. Diane, I just want to tell you how much I love and admire you and miss you on WAMU.
SHARONBut I just wanted to echo your comments. I work as a psychologist in Montgomery and PG County for a company that provides services and skilled nursing and assisted living facilities. And working in this job has forced me to have this conversation with my parents. And it's a conversation we actually have often as more medical conditions show up. And the one thing I would just encourage everybody especially I guess specifically in Maryland is to fill out the most, the medical orders for life sustaining treatment.
SHARONI think people don't realize how easy that is. It's just you and your doctor and you get to put down your choices for later in life. And it certainly doesn't necessarily allow for, you know, assisted, you know, death. But it will at least allows your family to know very simply in an easy front and back form one page, what your, you know, choices are come end of life.
REHMAbsolutely. And, Sharon, the only problem with just those papers is that sometimes doctors don't pay attention. I have a story in the book about an 81 year old woman, who had signed every document possible, do not resuscitate. And yet when she had a heart attack or a stroke, I've forgotten which, her neighbors called the ambulance. She was taken to a hospital. She was indeed intubated. She was resuscitated and woke up in the ICU absolutely infuriated, because those orders had simply been ignored. So that's why it's so important to do more than sign documents.
REHMYou must speak with your doctor frankly and honestly. And if your doctor will not support medical aid in dying or simply do not resuscitate, do not give me any extraneous treatment that would extend my life. If that doctor will not support that vision of yours find another doctor.
NNAMDIAnd thank you very much for your call, Sharon. I want to talk briefly about two people who found out ultimately that they supported medical aid in dying the hard way. Alexa Fraser whose father tried unsuccessfully to slit his wrists and overdose on pain pills, what did he eventually do?
REHMHe eventually told them as they were leaving his home not to call or come the next morning. He took his own life by gun. There is no more awful way to be forced to take one's own life. He was sick. He knew he was sick. He knew he was going to die. He did not want to linger any longer. He lived in the State of Maryland, and here we are, Kojo, living in D.C. our neighbor Maryland and they fail by one vote. Come on, folks. It's time.
NNAMDIOne of the people who changed his mind in Maryland was Eric Luedtke, a Maryland State Legislator.
REHMExactly. You had him on the program.
NNAMDII certainly had him on the program a few weeks ago.
NNAMDIAt first he talked about normalizing suicide. He had concerns about that, but he came around after experiences with his mother.
REHMOh, his poor mother, who finally realized that she did not want to have any more treatments. She swallowed a whole bottle of morphine that she had. She was rushed to the hospital. They took -- she just slept it off in effect. And she died a few weeks later. I think Eric Luedtke realized the extent or the depth of her desire. It is said we are all one bad death away from supporting medical aid in dying.
NNAMDIBefore I go back to the phones where your public awaits you, you talked with one of the few doctors in D.C., who's willing to assist patients in dying, Dr. Katalin Roth. You both believe that palliative and hospice care are not enough to help patients seeking pain management. Why is that?
REHMKojo, I spoke with a palliative care physician herself, who said to me, it can go a long way, palliative care, but there are certain kinds of pain it simply cannot reach. So an individual who says, we can take care of all your pain, means in effect, we're going to put you to sleep until you die, because you're still going to be suffering.
NNAMDIHere now is Kathy in Foggy Bottom. Kathy, your turn.
KATHYThank you. And I want to thank both of you, Kojo and Diane. And a few years ago I'm sure I would never have wanted to thank you, because the thought of this was very scary to me. I didn't have a conversation about how my father wanted to die. But I did have a conversation to say good-bye to him. I was moving out of the U.S. and going to visit him in Florida. My husband said it might be my last visit with him and I should say good-bye.
KATHYJust thinking about it now and remembering I had no interest, but I decided I was going to try even though I had no idea how. When I saw him, somehow these words came to me. I asked if he thought he's near the end of life. And he said, yes, in the most calm voice. And I said, what do you think will happen? We were not a religious family. He said, I think I'm going to see important people from this life like my mother, my father, my siblings. I was so relieved. And I left.
REHMOh, Kathy, that is just so lovely. You know, John Rehm said to me while he was still conscious, I'm looking forward to the next journey. He didn't specify what they might mean, but he was such a curious man about everything. But, Kojo, Kathy reminds me that every single one of us has a story to tell. Every time somebody asks me what I've been working on and I tell them they all have stories to tell of their own.
NNAMDIWhat about the oath doctors take to sustain life? Are doctors becoming more open to assisting patients in dying as part of a continuum of care?
REHMYou know, Dr. Roth, I had an email from her just today, who tells me that there is a conference out in California coming up this weekend of doctors, who will learn about medical aid in dying. I think the resistance to the idea of helping a patient die, because they have heard for so long that oath, "Do no harm," they forget that doing what they are doing, which is to continue treatment may in and of itself be doing the harm they should be trying to avoid.
NNAMDIAnd here's Willa in Fort Washington, Maryland. Willa, your turn.
WILLAGood afternoon and thank you for this show. My mom developed Alzheimer's, diagnosed in 2004. She didn't transition until 2017. Our family cared for her in home. Her last 16 months she was in in-home hospice. To watch your loved one deteriorate like that is -- I still haven't gotten over it.
WILLAI am so much in support of them allowing people to leave on their own terms. It should be something that you're able to do. And we had in-home hospice. But they never told us when we signed up that they wouldn't be there when she transitioned and we would have to give her the morphine that ended her life.
REHMOh, Willa. Your story is such a sad one and I'm so sorry for your lose, and I'm so sorry for the suffering that you, your mother, your family went through. It's not an isolated story. Certainly as far as Alzheimer's is concerned perhaps as time moves on and these laws do become more available throughout the country perhaps then legislators will begin thinking about Alzheimer's as well.
NNAMDIAnd the laws have been in the books in the State of Oregon for more than two decades.
REHMExactly. Without a single complaint of force or coercion or any sort of problem, not a single complaint, Kojo.
NNAMDIOver that 20 year period. I'm afraid we're out of time for this segment. Diane Rehm is the host of the podcast "On My Mind" and she's the host of the documentary called "When My Time Comes" and author of the book "When My Time Comes." Diane, always a pleasure.
REHMKojo, thank you so much.
NNAMDIShort break. When we come back we'll met an end of life doula, who facilitates death cafes in the region to help people talk about dying. And we'll hear from right to die opponents. I'm Kojo Nnamdi.
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