The aid in dying movement is growing. Montana, Oregon and Washington already have laws permitting right-to-die options. In January, a New Mexico district court authorized physicians to provide lethal prescriptions to mentally competent terminally ill adults. And last year, Vermont passed a law permitting patients to choose what advocates call “death with dignity.” Public support of assisted dying has expanded in recent years as baby boomers deal with the death of their parents, many of whom are living into their 80s and 90s and suffering from diseases linked to longevity, such as dementia and many types of cancer. Diane and her guests discuss the aid in dying movement and what is driving its growth.

Guests

  • Alexa Fraser daughter of a terminally ill patient who ended his own life.
  • Dr. Katherine Morris surgical oncologist and cancer researcher in Albuquerque, New Mexico.
  • Barbara Coombs Lee president, Compassion & Choices. She co-authored the nation’s first death with dignity law in Oregon that took effect in 1997 and was a nurse and physician assistant before becoming a private attorney.
  • Dr. James Lieberman clinical professor emeritus of psychiatry, George Washington University School of Medicine.

Transcript

  • 11:06:53

    MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Until recently, helping the terminally ill end their lives was illegal everywhere in the U.S. except for Oregon. Now, five states have right-to-die laws or court rulings. We've done several programs over the years debating the issues surrounding death with dignity and assisted suicide. Today's show is going to be different.

  • 11:07:25

    MS. DIANE REHMWe'll focus on the aid in dying movement and what's driving its growth. Here with me in the studio, James Lieberman of George Washington University School of Medicine, and Alexa Fraser. She's the daughter of a terminally ill patient who ended his own life. From Portland, Ore., Barbara Coombs Lee of Compassion and Choices. And from KUNM in Albuquerque, N.M., surgical oncologist and cancer researcher Katherine Morris.

  • 11:08:05

    MS. DIANE REHMThroughout the hour, we'll take your calls, your questions, comments. Join us on 800-433-8850. Send us an email to drshow@wamu.org. Follow us on Facebook or Twitter. Thank you all for being here.

  • 11:08:28

    DR. JAMES LIEBERMANThank you.

  • 11:08:28

    MS. BARBARA COOMBS LEEVery nice to meet you.

  • 11:08:30

    MS. ALEXA FRASERThank you.

  • 11:08:30

    DR. KATHERINE MORRISThank you.

  • 11:08:30

    REHMDr. Lieberman, as a clinical professor of psychiatry, talk about the differences that we now understand between assisted suicide or euthanasia and what many advocates are now calling aid in dying. You say it's more than semantics.

  • 11:09:03

    LIEBERMANYes. Aid in dying is correct. And the difference between the Oregon law, for example, that permits hastening death is a humanitarian and humane process. It's used rather rarely, considering there are 20,000 deaths a year in Oregon and less than a hundred with medical or similar assistance. Death with dignity involves the terminally ill. And the person would like to live longer, but the diagnosis is clear.

  • 11:09:45

    LIEBERMANAnd with suicide, there are many years of life expectancy remaining, and yet the person wants to terminate life. So that's an extreme difference. And the death is peaceful, in the case of this process of support the end of life but recognizing that there is no saving of life. But there is death with dignity. And it's planned, and the people are notified. Whereas suicide is usually kept secret, and it's usually violent. And it's usually shocking.

  • 11:10:26

    REHMAnd to you, Barbara Coombs Lee, there are now several states that allow death in -- or aid in dying. I know you co-authored the nation's first Death In Dignity Act in Oregon that took effect in '97. Talk about public support and how it can help to get this kind of movement started.

  • 11:11:03

    LEEWell, aid in dying can't become a legitimate and accessible medical practice without public support. But in fact there has been overwhelming public support. Gallup has been following public support since 1947. There's always been a strong plurality. And lately the majorities of people who support, in a terminally ill, mentally competent adult getting medication for peaceful dying has accelerated, has arisen to approximately 70 percent. That's overwhelming. There's nothing else in the United States that so many people agree with.

  • 11:11:40

    LEESo because of that public support and because of more visibility, there has been, as you alluded to, an acceleration of legalization. 1994, 1997, we were working on it in Oregon, 2008 in Washington, 2009 in Montana, 2013, 2014, Vermont and New Mexico. So with an increasing awareness, with increasing understanding, with increasing experience, quite frankly, as the baby boomers age, as we witness, help just be at the bedside of our parents and other loved ones, as we contemplate our own end-of-life experience, there's a growing demand. And I think that that cannot be denied.

  • 11:12:26

    REHMKatherine Morris, as a surgical oncologist and cancer researcher, talk about why you see the increase in interest in this entire movement.

  • 11:12:44

    MORRISI think we're starting to see more discussion about how we die in this country. And people are becoming less in denial and more aware of what can happen at the end of life and wishing to have a little bit more say in what happens for them personally.

  • 11:13:01

    REHMAnd of course you had a patient in Oregon, Cody Curtis, who asked you to help her in her own process.

  • 11:13:16

    MORRISThat's true. And she was the first patient that asked me to provide physician aid in dying. And it was a very challenging decision, even for someone like myself who voted for the law twice in Oregon. And I went through the process with her, and it was one of the most beautiful and peaceful deaths that I've experienced after having seen many of my patients go through that process. And I think the importance to her in being able to control how that end happened when she knew it was coming, and she knew she was suffering, was marked and was very impressive to me. And it made a huge impact on my life and my decision to become an advocate for this.

  • 11:14:02

    REHMI have seen that entire film. Cody Curtis was 53 years old. She was diagnosed with terminal cancer of the liver. There has been a film made titled "How to Die in Oregon" made by Peter Richardson, a filmmaker. Let's hear a clip from that 2011 documentary. And the voice you're going to hear is that of Cody Curtis.

  • 11:14:44

    MS. CODY CURTISIf I had an option, I would prefer not to die, thank you very much. But given that I know I'm going to die, does an extra three months of fluid leaking through my pores sound that great? Huh? No. Rather go when I'm still feeling OK and when I can still communicate with my family. So here are the drugs. It's very comforting to know that they're right here, and I don't have to go through anymore bureaucracy.

  • 11:15:16

    MS. CODY CURTISI don't have to take another trip to the pharmacy. They're here. It's whenever I decide. It's not that -- anything that I have to do. It's not like in the hospital where I'm always told, you have to have another CT scan or we're taking you down to do another procedure. It's my choice when to take them and whether to take them. My volunteer has told me that I'll know. And I just have to trust her on that. I'll know when my life isn't worth living anymore.

  • 11:15:48

    REHMAnd that was the voice of Cody Curtis. She was 53 years old at the time. And she had been diagnosed with terminal cancer of the liver. Alexa Fraser, tell us about your father. He made clear he wanted to have control over how he would die if he became terminally ill.

  • 11:16:17

    FRASERYes. My father made that clear very early on. I remember those conversations from an early age. As he hit his late '80s with Parkinson's and increasing heart ailments as well, he was just becoming weaker and weaker. He, I think, lived in dread of falling and needing to move into a nursing home or assisted living situation where he would not be able to make the choice that he had always expressed that he wanted to be able to make.

  • 11:16:51

    FRASERSome time ago, after several wonderful things had happened in our family, he -- my son graduated from eighth grade. He was in a play. My son was in a big play. And, later, my father turned 90. He realized that he was falling more frequently. And he did decide to take his own life.

  • 11:17:12

    REHMAnd did he have any assistance?

  • 11:17:16

    FRASERFrankly, he had -- we all knew. And I think it's also fair to say that we were all concerned about our personal liability if we were to assist him. In an ideal world, I would have been by his bed, holding his hand. And that was not possible. He let me know that he'd had a 14th fall in a very short period of time and that he was in quite a bit of pain, sent me an email saying that he was going to take a pain pill.

  • 11:17:44

    FRASERAs it turned out, he actually took 19 Percocet, which you might have thought for a man with a heart condition at age 90 might have been sufficient. It was not. He came to when a dear family friend came to his door. And they chatted for a few minutes, and he had a little repartee in which he said, 90 sucks, but, boy, was 89 great.

  • 11:18:15

    REHMHmm. Hmm.

  • 11:18:17

    FRASERAnd then he tried to slit his wrists.

  • 11:18:19

    REHMOh my.

  • 11:18:19

    FRASERAnd he did not have the dexterity or strength to do that.

  • 11:18:22

    REHMOh my. We've got to take a short break here. When we come back, we'll talk further about aid in dying and the growing interest in that process across the country. Stay with us.

  • 11:20:02

    REHMAnd welcome back. We're talking about the aid in dying movement that does seem to be growing across the country. Oregon was the first state to allow that. And, Alexa Fraser, you were talking earlier about your father and the fact that he was so desperate at age 90, after so many falls, to end his life. My question to you, did he talk with his own physician about how he might be able to do that?

  • 11:20:49

    FRASERI don't believe that he did talk with his own physician. I know that he had been storing up pain pills from dental procedures or other things along the way that somebody would give him, pain medication, prescription, and he would use a fraction and then store the rest.

  • 11:21:07

    FRASERJust to finish his story, after trying to cut his wrists unsuccessfully with his tremor -- he was not able to successfully cut his wrists -- he -- my husband and I went to see him. He asked to be freshened up and taken to his bed. And we left him in his bed knowing that he had long stored a gun near his bed, and aware that he would probably move on to his third attempt to take his life within about a 24-, 26-hour span. And that is indeed what was successful for him.

  • 11:21:46

    REHMThat must have been so difficult for you. I'm so sorry. And that took place just...

  • 11:21:53

    FRASERAbout a month ago.

  • 11:21:54

    REHMWow. Barbara Coombs Lee, tell us what is out there in the way that physicians in Oregon, New Mexico, Vermont now do have the authority and the legal right to help a patient like Alexa's father.

  • 11:22:20

    LEERight. I think anyone hearing Alexa speak -- certainly I can't help being overwhelmed with emotion and disappointment in our society, you know, for shame, for shame, that we would drive a person to violence, who is facing the end of life and wants to do it with dignity, and force that person into isolation and violence. It's not right. It's not right. And I think that experiences like this and the increasing visibility -- Alexis, (sic) thank you for telling your story because without these stories, people don't understand that the current harm is severe.

  • 11:23:05

    LEEPeople don't understand that the need is great. If it doesn't affect them in their own lives, they tend to think, oh, well, the status quo is all right. You know, hospice does a great job. Palliative care is growing. And all of that is true, but it does not mean that there isn't a tremendous need for people who want desperately to retain their personhood, who do not want to suffer a final relentless deterioration of body and mind as they move into their death process.

  • 11:23:38

    LEEThey want to leave this life with the personhood, being the person whom they have become throughout a lifetime. They want to leave this life in the comfort of their own beds in the embrace of the people whom they love. And the current system, the current non-system really, and the current deprivation of rights and privileges at the end of life works against them.

  • 11:24:02

    REHMTell me what criteria, Barbara, most doctors use to determine whether they will write a prescription to help an individual die.

  • 11:24:20

    LEEThe criteria in the states where aid in dying is statutorily outlined is very specific. And it's also very specific in the places where a court has adopted guidelines. Those criteria are followed meticulously by physicians and others. And those are that a person must be terminally ill. That is, within reasonable medical judgment, they are likely to die within six months with or without treatment. They must be mentally capable. They must be able to understand their decisions, the consequences of a decision, and make those decisions.

  • 11:24:57

    LEEAnd they must be free of any kind of outside influence or coercion that would tend to, you know, push them toward a decision. And, in fact, those criteria work very well. As you heard from the clip of Cody Curtis, it was very important to Cody that she have the medication, whether she decided to take it or not, and that's true for about 40 percent of people who go through the entire bureaucratic process in Oregon and Washington. They don't want to have the medication so they can take it necessarily. They want to have the medication so that they can have it...

  • 11:25:36

    REHMIndeed.

  • 11:25:37

    LEE...so that they can feel secure.

  • 11:25:39

    REHMAnd, Katherine Morris, speaking of Cody Curtis, you at first struggled to write a prescription for Cody. How did you finally come to the decision? And then how do you deal with that Hippocratic Oath that says, as a physician, you will do no harm?

  • 11:26:07

    MORRISI think I struggled with the decision because I wanted so desperately to continue to have Cody in my life and in the lives of her family and friends. I think, as you can tell from that clip, she was a remarkable human being and just...

  • 11:26:22

    REHMIndeed.

  • 11:26:23

    MORRIS...a wonderful source of life and light in this planet. And yet I was struggling with the fact that I knew she was going to face a pretty ugly end, and that would have been hard for her as a very dignified person.

  • 11:26:37

    REHMAnd very painful, very painful.

  • 11:26:41

    MORRISVery painful, very uncomfortable, and, for her, in her concept of who she was, very undignified. And it was listening -- she actually allowed me time to think about it. She told me when she made the first request, you know, I know this is very hard for you. I understand if you can't do it. But this is what I want. And I spent a very long weekend talking to family and friends and loved ones about what this meant and how it intellectually fit with my values. And I made the decision that, as her physician, it was the right thing for me to do to help her.

  • 11:27:21

    MORRISIn regards to the first, do no harm, Cody very clearly taught me that harm for her would have been taking away that control. It would have been moving a hospital bed into her apartment. It would have been saying, you have to wait and linger in a state of unconsciousness or pain. You have to get to a point where you can no longer get up and use the bathroom by yourself. And you have to know that your children and your family are going to watch the suffering. And for her, that would have been harm. So what she taught me was that harm is different for every single one of us.

  • 11:27:57

    REHMHmm.

  • 11:27:57

    MORRISAnd it's up to us to decide that. What means harm to us?

  • 11:28:00

    REHMAnd to you, Dr. Lieberman, what about the role of counselors, people like yourself, a psychiatrist, who have a patient come to them and say, I'm ready to die?

  • 11:28:23

    LIEBERMANWe spend our careers in suicide prevention. It's one of the main themes in psychiatry.

  • 11:28:27

    REHMIndeed.

  • 11:28:30

    LIEBERMANI've known a few situations where people have been ready and, shall we say, committed to ending their suffering or -- and taking into account their love of family and being realistic about possibility of a miracle that would change everything. I think that the American public is misled in ways. Death presentation in the media is mainly crime shows and war shows. Death is taken as something abnormal and avoidable. Miracle medicine is promoted but not the kind of acceptance along with love and grief that we go through in this case as we support each other and the person who is terminally ill.

  • 11:29:22

    REHMBarb Coombs, you have in Oregon, Washington, and Vermont certain foundations for establishing that that individual may use that law as a way out. What kind of eligibility requirements are there?

  • 11:29:51

    LEEAs I said, the patient must be mentally competent, terminally ill adult who is likely to die within six months with or without treatment, and is in control of the process and makes a request for a medication that would be effective in advancing the time of death if their suffering became unbearable.

  • 11:30:07

    REHMWhat about residency?

  • 11:30:11

    LEEThey must be a resident of the state. That's true of all three states where there are statutory guidelines in place, Oregon, Washington, and Vermont.

  • 11:30:20

    REHMWhat does that mean? Does that mean 30 days? Does that mean six months? What does it mean?

  • 11:30:29

    LEEEssentially, it means to be domiciled in the state with an intention to remain. So the law doesn't exclude people who, for example, they know that they want to be near family as they enter their dying process, and they come to be cared for. And they maybe move in with adult children, so...

  • 11:30:49

    REHMI see.

  • 11:30:49

    LEE...just because that -- they're newly located to the state doesn't mean that they aren't legally a resident. None of these states have become destinations for aid in dying, however. Lacking family, lacking a support system, lacking a medical and familial support system, you know, it's pretty difficult and unrealistic. People don't just uproot themselves and remove themselves from everything that they know and love in order to move to a death with dignity state. That just hasn't happened.

  • 11:31:22

    REHMCan you talk, Katherine Morris, about the option of voluntarily ending of eating and drinking?

  • 11:31:37

    MORRISSure. It has long been a reasonable option for patients who are in the process of dying and don't wish to extend that process. For them to stop eating and drinking, a process known, as you said, of voluntary stopping of eating and drinking, and it is certainly an option for every patient. I think it is a challenging one, and I think that the point about how death is portrayed in the media is particularly poignant in this case because this is not something that ends one's life as quickly as you might think it would.

  • 11:32:12

    REHMIt takes, what, 10 days to two weeks?

  • 11:32:18

    MORRISYou know, Barbara might know the average time from onset. But I would say that's certainly a reasonable estimate for some patients, depending on how healthy the rest of their body is despite the cancer or whatever is causing their imminent death.

  • 11:32:33

    REHMAnd you're listening to "The Diane Rehm Show." Barbara, I gather it is not so much the deprivation of food but of liquid that finally breaks down the organs.

  • 11:32:52

    LEEExactly. And that's why there's so much variability in how long it takes to die. People who have stored a lot of fluid in their tissues, for example, it will take them longer because it takes them longer to dehydrate. Sometimes it takes as long as 30 days. But the average is about 14.

  • 11:33:09

    REHMAnd, Alexa, did your father use any counseling methods? Did he talk with other people besides his family?

  • 11:33:22

    FRASERI don't think he did. But I think it's very important to say how long-held this belief was. A few days ago, I was going through his personal papers, really joyous things, and I found one letter which was a letter between my childhood housekeeper and him. She had been diagnosed with cancer. And her P.S. was, is there a way that I can die less painfully?

  • 11:33:51

    FRASERAnd his answer was, there is a right to death with dignity which every person should have and which no government should have and which no government or organization can take away. That was written in 1974, May 1, 1974. And he then goes on to say that it's hard to discuss. I think you're wise to bring it up. Perhaps you can work out something with your doctor if he's as wise as you are, which I loved that he said that to her.

  • 11:34:19

    REHMBut of course it would have depended on where she lived.

  • 11:34:25

    FRASERIt -- well, in 1974, I don't think there were any states in support of this.

  • 11:34:28

    REHMThere weren't any.

  • 11:34:29

    FRASERShe lived in D.C., and he was acting in his natural self, asking for an informal arrangement.

  • 11:34:37

    REHMIndeed. And, James Lieberman, do you think that there are such informal arrangements between doctors and their patients?

  • 11:34:50

    LIEBERMANMy father was a doctor, and I think sometimes people would ask him about the black bottle, which was supposed to contain some lethal dose. But I'm not sure of the context that they were addressing, whether it was a peaceful chosen death or whether it was something of mischief. In any case, the -- I need to emphasize one thing, that, while we're healthy and have all our full faculties, we have to have an advanced directive, and we have to have a power of attorney that...

  • 11:35:28

    REHMA durable power of attorney.

  • 11:35:29

    LIEBERMANDurable power of attorney that says who it is that will be in charge when I no longer am able to make decision for myself. And this saves families from terrible conflict because grown siblings, grown children, can have disputes. And sometimes one that is least involved and comes from farthest away, perhaps out of guilt, makes a strenuous case for doing things a different way than the ones who live near the dying person might have been well aware of. So this kind of thing is not just for yourself. It's also for your children who are going to have to work things out.

  • 11:36:16

    REHMBarbara, tell me a little more about Compassion and Choices. Didn't it begin with the Hemlock Society?

  • 11:36:28

    MORRISOne of our predecessor organizations was the Hemlock Society, yes, which was begun in 1980 shortly after the publication of a kind of a seminal book in the history of the movement called "Final Exit" by Derek Humphry. The organization went through quite a few changes, one being a change of name to End of Life Choices and then a merging with another organization called Compassion and Dying.

  • 11:36:55

    MORRISSo it became Compassion and Choices. And also a -- one of the significant changes in the history of our organization was a conscious decision not to pursue an extra medical method, methods where people would be lonely and on their own, and surreptitious, covert, but to change the paradigm of medicine so that patients could be empowered with these decisions themselves in the context of excellent end-of-life care. So that...

  • 11:37:28

    REHMAll right. And we're going to take a very short break here. When we come back, we have many callers waiting. I want to get to as many of you as I can. Stay with us.

  • 11:40:02

    REHMAnd we're going to go right to the phones as we talk about the movement called Aid in Dying that is growing across the country. I think the idea of aiding the dying is far more palatable to people than assistant suicide. We're going to go first to Jimmy in Greensboro, N.C. Hi, you're on the air.

  • 11:40:40

    JIMMYThank you so much. I am 54 years old and I decided a long time ago when I came to the realization and acceptance that you do not live forever in this world. And I am a strong Orthodox Christian believer, which there's a bit of a conflict there. So I have just talked to my priest and I have definitely talked to my family. I do not want to lay on my back like my father did for six months and suffer that suffrage.

  • 11:41:19

    JIMMYSo I have decided that I will probably stop eating and stop consuming. And fortunately for me I'm only 145 pounds right now, so I hope it doesn't take 30 days. But, you know, it's just the reality of it. And there is a cost factor. There is a suffering factor. It's all of those things.

  • 11:41:47

    REHMAnd Barbara, do you want to comment on that? He talked about stopping eating but it is the fact of taking in liquids that makes even more the difference, doesn't it?

  • 11:42:05

    LEERight. People who stop eating but do not stop drinking have a much more prolonged and difficult death. Dying of dehydration is relatively quick. Kidney failure is a very gentle death, but it is much more difficult to starve. So that's the crucial element is stopping drinking. Ice chips, something to sooth the mouth to keep the feeling of parched mouth at bay can be very effective.

  • 11:42:32

    REHMAnd to Carol in Orlando, Fla. Hi, you're on the air.

  • 11:42:39

    CAROLThank you, Diane. I have listened to your show for so many years with great interest. And this one is of particular interest to me. I follow after a grandmother that I know of and a mother who both laid in their beds for many years in very well-caring nursing homes from Alzheimer's. My grandmother was 11 years in a vegetative state with Alzheimer's. And my mother was three years in the nursing area of where she lived.

  • 11:43:20

    CAROLThe constraints under which the Oregon, Washington, etcetera states work with is that you have to be mentally capable of making that decision. I watched the movie "How to Die in Oregon." You had to make that decision just at the very end, which neither of these women could do. But I have to tell you that after two months of not saying a complete sentence two days before she died from not eating and not drinking, my mother sat up in bed, grabbed my elbows and said, I just want to be free. That was the first time she had been mentally competent.

  • 11:44:05

    CAROLAnd what can our -- your guests today say to what the baby boomers who are going to crush the GNP if we have Alzheimer's at the percentage that our parents did? What can they say to something we can start -- a movement we can start that says, listen I want to write down that if I'm in bed and having to be harnessed out of bed, I don't want to be living anymore?

  • 11:44:34

    REHMAll right. Barbara.

  • 11:44:37

    LEEYes. This is very much part of our movement. This is top of mind for so many of our constituents. But you're right, a person with Alzheimer's wouldn't be eligible for a death with dignity bill like Oregon, Washington or Vermont because you're not both terminally ill and mentally competent at the same time. That doesn't mean that there aren't options and you can' empower yourself and your family members.

  • 11:44:56

    LEEWe have something that we call the dementia provision that we recommend people add to their advanced directive. Advanced directives are -- usually come into effect when you are either terminally ill or permanently unconscious. And this adds a third condition. When I am so demented, and you can describe however it is -- our provision describes it as unable to carry on activities of daily living and recognize my loved ones and feed myself, etcetera -- I would want the same stipulations that I make for terminal illness. That is, I would or would not want a feeding tube. I would or would not want treatment for a life-threatening illness.

  • 11:45:32

    LEESo in other words, we're kind of empowering -- you can empower the people around you, medical professionals and your families to do what Joy and Lynn calls creative collaboration with the forces of nature. When my brain is shutting down, when I have forgotten how to eat, I have forgotten who I love, I've forgotten everything and I'm in a fetal position just being kept alive, I want you to collaborate with nature to allow a natural death at the earliest possible moment. That's my instructions to my family members. And you can empower them and...

  • 11:46:10

    REHMBut how?

  • 11:46:11

    LEEReach some consensus. Well, empowered with that kind of understanding I think family members can say, you know, when heart failure ensues, mom wouldn't want this treated. When an infection as benign -- a seeming -- an infection as a urinary tract infection or certainly pneumonia can be fatal if untreated. I wouldn't want those treated if I were in a demented condition. If I have forgotten how to eat, if people put food in front of me and I cannot remember how to get it into my mouth, that's nature's way to shut down the body and cause a natural death. I don't want to be fed either.

  • 11:46:49

    REHMKatherine, do you have something to add?

  • 11:46:54

    MORRISI think it cannot be overemphasized the importance of an advance directive, and more importantly, an advanced directive that has been talked about with your family and friends. I think that -- I've seen many cases where there's been interfamily conflict about what someone's advanced directive means and about what should be done for them. And unfortunately in the current environment, it's the more medically interventionalist or aggressive treatment options that usually went out in those situations of conflict.

  • 11:47:26

    MORRISSo I ask everybody, sick or not, and of any age to consider what they want to the best of their abilities and to really talk about that with their family and friends.

  • 11:47:38

    LEEI would so much like to second that. Of course my father's death was horrific to live through and for him, horrific to die through and terribly sad and enduringly sad. And yet I was so clear on what he wanted that there was -- at some level I was just proud for what he was doing in taking charge of something that mattered to him so much, and living consistent with his values.

  • 11:48:10

    LEESo over a period of years I'd come to understand what his values were. And there was, at some level no shock, at some level no surprise. And I think that the level of communication about something very difficult within a family -- and different people may have different points of view. And that's just fine as long as they're speaking for themselves.

  • 11:48:33

    REHMJim Lieberman.

  • 11:48:34

    LIEBERMANMay I say that we consider life to be sacred but there comes a time when what we mean by life may be not defined as it used to be. And when a person has wishes, including death with dignity, where do we go with that? And I'm so glad to hear this articulated by people who are involved with it every day. I will say that our obituary columns are filled with phrases like lost a battle to cancer as though it was a sporting event or a heroic effort. And it's part of life. And I don't like the sports or war analogy to be applied to this area of life.

  • 11:49:25

    LIEBERMANWe must confront it. We should do so maturely, lovingly and with hopefully active acceptance rather than protest.

  • 11:49:38

    REHMAnd I must say, for my own personal experience, as many of you know, my husband died a little more than a week ago. He had very serious Parkinson's disease. He could no longer -- he no longer had the use of his arms, his legs, his hands. He could no longer feed himself or walk. And there was a long discussion with his doctor who said legally, morally, ethically I cannot help you when John said, I am ready to die. So John took the extraordinarily courageous route of saying, I will no longer drink. I will no longer eat. And he died in ten days.

  • 11:50:54

    LEESo I am very, very close to that situation. Now we had talked about it for years and that to me, Jim Lieberman, is such an important part of this whole process, that it be discussed that wishes within the family be known.

  • 11:51:24

    LIEBERMANI remember a philosopher who spoke about this thing. Death is the opposite of the weather. Nobody talks about it and everybody does something about it.

  • 11:51:35

    REHMExactly. All right. Let's go back to the phones to Heather in Cincinnati, Ohio. You're on the air.

  • 11:51:47

    HEATHERThank you for taking my call.

  • 11:51:48

    REHMSurely.

  • 11:51:48

    HEATHERI am a social worker at a nursing home in Cincinnati where the average age is only about 55 and I wondered if it's anticipated that the right-to-die movement will ever be expanded to allow those with progressive neurological disorders with no cure, to end their life sooner than receiving a terminal diagnosis. Since diseases such as MS, Huntington's, ALS have disease processes that are sometimes between two and twenty years, however, significant amounts of suffering are experienced until they reach the point where life is anticipated to end within six months.

  • 11:52:19

    REHMThat is such an important question, Barbara.

  • 11:52:23

    LEEYes. I would want everyone to understand that there is no one who is disqualified from aid in dying, from death with dignity because of their diagnosis. And in fact, ALS, Amyotrophic Lateral Sclerosis is the second most common diagnosis among people who use the Death With Dignity Act in Oregon. Every illness, neuromuscular degeneration and other chronic illnesses, everyone enters a stage, a period when a physician is able to predict with reasonable certainty that the patient will die with or without treatment within six months.

  • 11:52:59

    LEESo no one is ineligible. And everyone, so long as they maintain their mental capacity, their decision-making ability, everyone, no matter what their diagnosis is, would be eligible for death with dignity.

  • 11:53:11

    REHMAll right. Let's go now to Richard in Tampa, Fla. You're on the air.

  • 11:53:19

    RICHARDThanks, Diane. You have my deepest sympathies and empathies with the loss of your husband.

  • 11:53:24

    REHMThank you so much.

  • 11:53:26

    RICHARDWe lost our mom around ten years ago. And I listen all the time to NPR, to your show. I love that I'm staying curious and learning. And one thing I'm gonna do, I've got to get to the state that gives me the choice. I mean, when I heard that woman say, I wish I could've been there when my dad did it. We all knew he was going to do it, but I couldn't be there. You know, we were worried about legal complications. Are you kidding me? The word dysfunctional -- we've heard that here, haven't we -- dysfunctional harm control.

  • 11:53:57

    RICHARDOur mom never saw 50. She went in on Thanksgiving about ten years ago, yellow in the eyes, oh jaundice. And the doctors walked out like ghosts because there was no sign of jaundice. And they knew -- the doctors knew right then and there what it was. It was terminal. She had terminal cancer in her GI. She was 100 pounds wet, 5' tall, healthy as a horse. I never thought she'd go before my dad. No one did.

  • 11:54:23

    RICHARDSo what I'm saying is, you know, I'm listening to everything and I am short on time. I mean, if we're -- I think the universe -- number one, my mom had insurance -- I think the universe, number two, that my dad could afford the co-pays. And of course, my mom had her sister came over and were like a princess. They...

  • 11:54:42

    REHMBut, Richard, what are you saying? What is your...

  • 11:54:47

    RICHARDWhat I'm saying -- well, what my point is is this. It's a whole control thing. I couldn't be with her in the final moments because they were shipping her back and forth. She's in the hospital, then they kick her out of there and...

  • 11:55:00

    REHMAnd that's the problem, isn't it?

  • 11:55:03

    LEERight. Right. Right. That's -- if I might interject, it's -- the people's -- honoring people's values, beliefs, honoring people's priorities. And so when there are conversations and an awareness death is approaching, it is inevitable, it is becoming imminent, I think it's important for people to take an assessment of their priorities. And if my priority is that I want to die in my bed in my home with my loved ones there, I and my family will have to be a bit assertive with physicians who would otherwise want me to be in the ER or in the ICU so that they could quote unquote "do everything."

  • 11:55:45

    LEEThat's going to disrupt my first priority. So that taking account, taking assessment, verbalizing values, beliefs and priorities as the end approaches, all with family, I think that's so important.

  • 11:55:58

    REHMAll right. And I do want to let you know that we have a link on our website to the film "Death With Dignity in Oregon." And if you go to drshow.org you can find that link. Want to thank you all so much. Dr. James Lieberman, Alexa Fraser, Barbara Coombs Lee, Dr. Katherine Morris. You can find all of them on our website. Thank you so much.

  • 11:56:40

    LIEBERMANThank you.

  • 11:56:41

    LEEThank you, Diane.

  • 11:56:41

    MORRISThank you, Diane.

  • 11:56:42

    REHMAnd thanks for listening all. I'm Diane Rehm.

Related Links

Topics + Tags

Comments

comments powered by Disqus
Most Recent Shows

The Future Of U.S.-Cuban Relations

Thursday, Dec 18 2014Cuba releases American contractor Alan Gross after five years' imprisonment on espionage charges. The U.S. releases several Cubans in exchange. Details on the prisoner swap and the future of U.S.-Cuban relations.

The Social And Economic Effects Of Ebola In West Africa

Wednesday, Dec 17 2014The ebola epidemic in West Africa is not just a health care crisis. It has affected every corner of society in the countries most affected. Schools have been closed for months, infrastructure projects have been put on hold and GDP growth has slowed to a crawl. A discussion of the social and economic cost of Ebola in Guinea, Liberia and Sierra Leone.