Youssef Cohen rides to a doctor's appointment with his wife Lindsay Wright on March 16, 2016, in New York City. Cohen, who died on March 31, had an incurable cancer called mesothelioma and advocated for the right to choose how and when to die. The national "right to die" movement is also known as "death with dignity," or called "physician-assisted suicide" by opponents.

Youssef Cohen rides to a doctor's appointment with his wife Lindsay Wright on March 16, 2016, in New York City. Cohen, who died on March 31, had an incurable cancer called mesothelioma and advocated for the right to choose how and when to die. The national "right to die" movement is also known as "death with dignity," or called "physician-assisted suicide" by opponents.

Earlier this month, voters in Colorado overwhelmingly approved a so-called Death with Dignity ballot measure. It allows doctors to prescribe life-ending medication for terminally ill patients. Colorado joins four other states and the District of Columbia that have similar options. Advocates are pushing more states to consider aid-in-dying measures. The laws are controversial, to be sure. But as medical advances have done much to prolong life, more people are demanding greater choice in how and when they die. This hour offers an update on the debate over whether doctors should be permitted to give patients the means to take control of their own death.

Guests

  • Dr. Ira Byock Founder and chief medical officer, Providence Institute for Human Caring; emeritus professor of medicine, Dartmouth's Geisel School of Medicine; author of "The Best Care Possible"
  • Haider Warraich Fellow in cardiovascular medicine at Duke University Medical Center; author of the forthcoming book, "Modern Death: How Medicine Changed the End of Life"

Transcript

  • 11:06:53

    MS. DIANE REHMThanks for joining us. I'm Diane Rehm. It was only a few decades ago that half of Americans died at home, which surveys show most people would prefer. But today, 70 to 80 percent die in a hospital, nursing home or other long term care facility. As many of you know, I'm a supporter of death with dignity. Before I step away from the microphone at the end of the year, I wanted to take the opportunity to speak with two thoughtful doctors who have opposing views on the subject.

  • 11:07:31

    MS. DIANE REHMJoining me from a studio at NPR West, Dr. Ira Byock, chief medical officer of the Providence Institute For Human Caring in Torrance, California. And from a studio at Duke University, Dr. Haider Warraich, author of the forthcoming book "Modern Death: How Medicine Changed the End of Life." I hope you'll join us with your questions, comments, 800-433-8850. Send an email to drshow@wamu.org. Follow us on Facebook or send us a tweet.

  • 11:08:15

    MS. DIANE REHMAnd Dr. Byock, Dr. Warraich, thank you both for joining us.

  • 11:08:21

    DR. IRA BYOCKThanks for having us.

  • 11:08:22

    DR. HAIDER WARRAICHThanks, Diane.

  • 11:08:24

    REHMDr. Warraich, let me start with you. In an op-ed, you wrote for the New York Times early this month, you say it has become harder for doctors to know what is meant by "do no harm," from the Hippocratic Oath. Explain that to us.

  • 11:08:52

    WARRAICHWell, Diane, I think over the past few decades, you know, medicine has changed so much. There was time when, you know, medicine was all art and now -- and was barely a science. What has happened over the past few decades is that we have now developed all these technologies that can sustain life beyond, I think, what we could've ever imagined before. When I say that, you know, it's hard to sort of tell whether you're harming a patient or benefitting them, I mean, that, you know, there's a lot of times we have patients who are critically ill.

  • 11:09:30

    WARRAICHAnd these patients are subjected to a lot of procedures, a lot of life-sustaining therapies that we, at many points, are -- can be considered futile and we don't even know if they're doing the patients any benefit. And probably the most important thing, there are times when we don't even know if the patient would have wanted those treatments, if they can be called treatments to begin with. And that's why I think that that line has become much blurry since the time of the Hippocratic Oath.

  • 11:09:59

    REHMYou said that in writing your own book, you've changed your own views. Tell me about that.

  • 11:10:11

    WARRAICHWell, Diane, you know, I was an intern in Boston and one of the things that really surprised me from my transition to medical school was that suddenly, I was the person responsible for helping patients and their family members through the last moments of life and sometimes beyond. I was taught how to pronounce people who had passed away. I was taught how to have discussions about different aspects of end of life care, but what I didn't know was how did we end up here?

  • 11:10:44

    WARRAICHHow did life and death change so much over such a short amount of time? So and that was why I started to do my research and write the book. And when I wrote the book, I knew that I wanted to write about assisted death, but I didn't really have a clear position on it. The aid in dying initiative went on the ballot in Massachusetts around the time that I was still a resident and most of the senior physicians who were there opposed it. So I went into the book kind of also sharing that sort of same type of view.

  • 11:11:21

    WARRAICHBut the more I read about it, the more research I looked at, particularly all the data from Oregon and the more I really thought about all the things that we do at the end of life, such as, you know, terminal sedation, terminal dehydration, sometimes withdrawal of life-sustaining therapies, I realized that the line between assisted death or death with dignity and all these other practices was, in some ways, just imaginary, just a hypothetical line that, you know, we had sort of drawn.

  • 11:11:52

    WARRAICHAnd so during the course of this book, you know, I understood that this was a position that I was willing to take and I understood that this was something that many physicians are opposed to, but I felt strongly enough that this was something I believed in. That's why in the book and in the op-ed, I made it very clear that I do think that terminally ill patients do have the right to seek assisted death with the help of a physician.

  • 11:12:15

    REHMDr. Haider Warraich, he is a fellow in cardiovascular medicine at Duke University Medical Center. He's the author of the forthcoming book titled "Modern Death: How Medicine Changed the End of Life." And now to Dr. Ira Byock. I know that you, Dr. Byock, believe so strongly in palliative care. Describe what you mean for us by palliative care.

  • 11:12:53

    BYOCKGood morning, Diane. Palliative care is a team approach to care that addresses people's physical, emotional, social and spiritual needs, their wellbeing, and that of their family. You know, Dr. Warraich do disagree. I read his op-ed and I wished that I was a faculty member at Duke at the time, rather than a faculty member of Dartmouth were I'm a emeritus professor because these are common concerns that doctors in training have that we regularly, you know, correct.

  • 11:13:33

    BYOCKAnd what terminally ill patients do have a right to is the best care we can possibly give them. Dr. Warraich is absolutely correct that oftentimes in the ICU, we don't know if people would want to be there or not. Unless we pause and consistent with medical practice guidelines have a goals of care conversation with patients where we discuss their condition, what is physiologically and functionally achievable and whether they want that with all the tradeoffs that come with intensive medical therapy.

  • 11:14:08

    BYOCKWe don't know whether we're doing the right thing or the wrong thing. I think, in his op-ed, and in the discussion even as it's beginning to unfold, we're setting up a false dichotomy between what I would describe as bad care on the one hand and then assisted suicide on the other. But really, the choice ought to be between, you know, the very best care possible in the hospital or, in fact, transitioning to care at home where, as you correctly stated, most people want to be. The assisted suicide movement has set up this dichotomy and I think has drained all of the energies that should be going into correcting some of the egregious deficiencies in medical training, in clinical practice, in hospitals and nursing homes and in the difficulties of getting the best care, including hospice care, all of which could be fixed.

  • 11:15:08

    BYOCKBut instead, here we are again, you know, talking about whether doctors should legalize physician-assisted suicide or whether that should be legally available to people. I think the real question should be why are people still dying badly in America and what can we do to assure that people die well?

  • 11:15:28

    REHMYou know, Dr. Byock, I'd be interested in your reaction to the voter turnout there in Colorado that now, I gather, becomes law, a referendum, allowing people to choose whether, in fact, they want the right to die.

  • 11:15:54

    BYOCKSo I think it's very consistent with what's happened in California and other states and, frankly, what we saw in the general election. People are furious at problems that are going unaddressed and they're angry with the establishment. You know, the very fact is that after 30 years of hospice care and the initiation of palliative care, many people are still at risk of dying badly in their own communities. And we've been assured by, you know, authorities that will be giving the best and, in fact, they know it doesn't happen.

  • 11:16:30

    BYOCKSo many people have horror stories of their grandparents or their parents dying in ways that nobody would want, being in nursing homes that are half-staffed and really destined to make their loved one feel undignified, being in hospitals and ICUs, much as Dr. Warraich has described, where the care there is pretty close to medical battery. And so they're, you know, angry and they're taking control by saying, well, if you're not going to care well for us, we're gonna demand the ability to end our life when we want.

  • 11:17:08

    BYOCKI understand the impulse and I get the anger. I'm angry, too, about this, but I think that anger could be better directed at legislatively requiring medical schools to actually follow the Institute of Medicine's guidelines of vastly improving medical training, requiring doctors, including fellows like Dr. Warraich, to have month of palliative care rotation so they learn how to use these medications in appropriate ways so that people are comfortable and their lives aren't shortened and I can go on and on, but these are fixable problems. Instead, we're dealing with the public that is rightfully angry.

  • 11:17:51

    REHMDr. Ira Byock, founder and chief medical officer of the Providence Institute For Human Caring in Torrance, California. Short break here. We'll be right back.

  • 11:20:01

    REHMAnd welcome back. Earlier this month voters in Colorado approved a so-called death with dignity ballot measure, allowing doctors to prescribe life-ending medication for terminally ill patients. Colorado now becomes the fifth state, and the District of Columbia, to have similar approaches to patients choosing for themselves when and how to end their lives. Dr. Warraich, you heard Dr. Byock saying that what's needed is better training, that there is a false dichotomy, that what is needed is to provide the best kind of care rather than these so-called death with dignity laws. How do you respond?

  • 11:21:10

    WARRAICHWell, Diane, again it's a great honor for me to be, you know, having this discussion with Dr. Byock. But I think that the false dichotomy that he presented is actually incorrect. I think, you know, what he's saying is the true false dichotomy that has been presented is that you can either get palliative care, or you can get assisted death.

  • 11:21:34

    WARRAICHAnd I think that's completely false, and I will not offer you my opinion, I will offer you data. If you look at Oregon, 92 percent of patients in Oregon who opt for assisted death are getting home hospice services. And what that means is that these are patients who have limited diagnosis, they're able to get the care they want at home in the setting that is optimal, that everyone will agree is a metric for high-quality palliative care.

  • 11:22:02

    WARRAICHYet despite that, there will be a small amount of patients, again this is not a large number of patients, this about .18 percent of all patients who pass away in Oregon, who despite having -- being in a state, which has -- ranks, you know, ranks amongst the best in palliative care, still do not -- are not able to get the type of symptom relief that even the best palliative care can deliver.

  • 11:22:29

    WARRAICHSo again to present this dichotomy is I think incorrect. I think palliative care is extremely important, and high-quality palliative care should be delivered to all patients, regardless of what type of end they would like to have. As far as the training is concerned, I again -- you know, I am not going to be the one disagreeing. I'm very passionate about palliative care, as well.

  • 11:22:52

    WARRAICHI have, you know, done a lot of training during my residency time and even as a year I took working as a hospitalist, taking care of oncology patients. Having said that, I think physicians need to be humble about this. We need to realize that even with our best efforts, there will be patients that we won't be able to provide them the sort of comfort that they would like or the sort of autonomy that they would like.

  • 11:23:14

    WARRAICHAnd at that juncture we need to give patients the right to make that decision for themselves.

  • 11:23:21

    REHMWhat do you believe are the main reasons more and more people are advocating for the option of making their own choices?

  • 11:23:35

    WARRAICHDiane, you know, I think one -- we spend our whole lives, and, you know, this was -- this became so clear to me when I was writing this book, that, you know, I think more and more people realize that, you know, death itself is not the enemy, it is in fact the fear or death. And, you know, the fear of death dominates every single decision we make every single day.

  • 11:24:00

    WARRAICHAnd the reason I think people fear death so much is because of how -- how little we can have any sort of control or sway over this. You know, these patients are -- and these people, they are -- they have terminal diseases, they suffer. They are not suicidal. They know that they will die. This is about them wanting to have some amount of control over how they die.

  • 11:24:28

    WARRAICHAnd I think that's why, you know, words matter, and that's why I think we should not equate what these patients want with suicide because this is not about whether the patient or the person will die or not. This is about having some semblance of control over how that end will look like.

  • 11:24:46

    REHMDr. Byock?

  • 11:24:49

    BYOCKSo I agree with a lot of what Dr. Warraich has just said. And yet people are not choosing to use a lethal prescription because of pain or uncontrolled symptoms. Yes, many of the people in Oregon are in hospice care, but when you look at the data that Dr. Warraich just talked about, you find that 90 or more percent are not dying because of pain, they're taking that lethal prescription, or getting it, because of less ability to enjoy life. That's 90 percent. Ninety-one percent, loss of autonomy, 78 percent loss of dignity, being a burden to others almost 50 percent.

  • 11:25:34

    BYOCKYou have to get down to 25 percent say it's about pain. And yet notice that even today in Washington, D.C., and in Connecticut and Maryland, where there are active legislation or citizen initiatives about physician-assisted suicide, what's being sold to the electorate is there is some few people who we can't control their pain, which by the way is factually not true. It's pharmacologically not true.

  • 11:26:02

    BYOCKBut when you look at how this -- these medications are being used to shorten life, it's actually about existential concerns. And when you base this on, well, people have a right to their own destiny, which, you know, frankly I agree with, you start to look at, well, if we can, you know, end life because of a loss of autonomy or loss of sense of dignity or ability to enjoy life, why can't we end it -- you know, why does it have to be predicated on a terminal illness.

  • 11:26:32

    BYOCKAnd then you find places like, you know, The Netherlands or Switzerland, where people are now being routinely, and at their own request, put to death because of depression, because of a loss of ability to enjoy life. There's now a bill in the Dutch parliament that allows -- that would allow for generally healthy people who feel like they've just lived long enough to be euthanized.

  • 11:26:59

    BYOCKSo I think this becomes not just about medical care but really about social engineering. And even in Oregon, by the way, it's still easier to qualify for a lethal prescription than it is to qualify for hospice care because on both you have to be terminally ill, but to qualify for hospice care you also have to give up treatments for your cancer or your heart failure or your liver disease in order to get care for your comfort and quality of life that hospice represents.

  • 11:27:32

    BYOCKSo something -- from a social engineering perspective, this doesn't look like a progressive extension of personal freedoms. It really starts to look like a utilitarian valuing of when life is worth sustaining and when it's not.

  • 11:27:45

    REHMDr. Warraich?

  • 11:27:48

    WARRAICHSo, you know, as far as referencing to The Netherlands is concerned, I have two points. One is that, you know, I think overall the law in The Netherlands has actually really improved overall quality of end-of-life care there. And, you know, I think we can take these sort of individual cases and use them to sort of scare people into thinking that there is this, quote-unquote slippery slope, but if you look at the overall trend, it's actually very fixed.

  • 11:28:15

    WARRAICHThe other thing I will say is that, you know, again, it's -- you know, I offer -- I offer data, and the data from the United States, and again this is us discussing assisted death in this country, we have the benefit of having 16, 17 years' worth of data from Oregon. And what that has shown is that there has been no abuse of this law to date. There has not been any push to expand the parameters.

  • 11:28:43

    WARRAICHAnd all the laws that we are talking about and which are the parameters of this particular debate are very, very fixed and are very similar to what has been presented in Oregon. So just like we don't use data from other countries to approve drugs or devices in this country, we should stick to the data that is present from this country that has been generated within the Constitution and within the laws of this country to develop our arguments here. And I think that Oregon supports that fully.

  • 11:29:09

    REHMDr. Warraich, isn't it true that only two-thirds of those who have been given medication to end their lives in Oregon have actually used it?

  • 11:29:25

    WARRAICHDiane, that's entirely true, and again, this shows that this is about -- this is about empowering people with terminal illnesses. This is not about giving out medications to people whose life is uncertain, whose prognosis is uncertain. This is about empowering patients who have -- you know, again, I want to redirect this conversation to the people who are suffering. These are people who are terminally ill. They are so ill they cannot participate in this public debate. So, you know, in some ways as a physician, you know, we have to be their voice.

  • 11:30:03

    WARRAICHAnd the people who do not use it are people who just needed to have the comfort to know that if they need to use it, they can use it.

  • 11:30:12

    REHMDr. Byock?

  • 11:30:14

    BYOCKSo I disagree with -- respectfully disagree with several of the things that Dr. Warraich has just said. So you can pick your data, and you're picking data very carefully. There is a slippery slope that's happening in Oregon because I was very active in that conversation nationally when Oregon law was being debated, and it was all about a few cases of physical pain that we could not control.

  • 11:30:37

    BYOCKNow I just read you data from the Oregon Department of Health website, and it shows that pain is less than a third of why people are getting these prescriptions. And in fact nowadays there are multiple, you know, routes down the slippery slope. One is that we're now giving prescriptions -- physicians are giving prescriptions to people who are, you know, maybe terminally ill, though many of them live beyond that six-month qualifying period. Many of them live longer than a year and yet have that lethal prescription.

  • 11:31:14

    BYOCKThey're getting those prescriptions because of existential concerns, not physical pain or suffering, and nowadays, you know, it used to be talked about as being the option of last resort, but I find that that has fallen away from the public conversation, and many people who are terminally ill get that prescription, just choose to use it at their own timing. Again, though, we've taken ourselves away from the larger conversation in America.

  • 11:31:44

    BYOCKYou know, the slippery slope is very active here. Nine days ago there was an article in the San Jose Mercury News, an op-ed, about the restrictions in the California law and an active argument being made that that new law needs to be expanded so that people with Alzheimer's disease can make use of it. On a rights basis, it's a pretty hard thing to argue against, they have rights, too, right. You know I mentioned the Dutch argument or experience, but that is the same rights argument that is being used in the United States.

  • 11:32:24

    BYOCKAnd lastly I would say as long as we're trying to avoid sowing fear, in Dr. Warraich's op-ed, he makes the allegation that the use of morphine and other opioids is a way that doctors sort of wink at shortening life, and yet the data there, the pharmacology, would argue strongly against that. That's just factually incorrect. We can disagree about opinions, but let's stay, you know, focused on at least agreement on the pharmacology and the facts.

  • 11:32:58

    BYOCKUsed correctly, unless it's really intended to end life, morphine and other pain medications are entirely safe and can be used to alleviate suffering and allow people to perhaps derive some value from this difficult time of life.

  • 11:33:16

    REHMDr. Warraich?

  • 11:33:19

    WARRAICHSo, you know, as far as morphine is concerned, I think there is this accepted medical principle, which is called the double effect, which is something that, you know, we have used very frequently and since the advent of palliative care. And again, you know, as far as this discussion is concerned, you know, I will agree with Dr. Byock. I definitely agree that this option should still be the option of last resort.

  • 11:33:44

    WARRAICHAnd if you look at all the legislations, including the ones that have passed, including that ones that are being considered in states like New York, physicians are required to present all the options to patients and to pursue them before this is offered. And personally if -- you know, I practice in a state where this is, you know, not legal, although there are efforts to sort of start a movement. This will not be something I can offer, but what I can offer is high-quality palliative care to the best of my ability and training.

  • 11:34:15

    WARRAICHBut as far as pharmacology is concerned, you know, I think -- I think that this is -- I think to say that, you know, morphine or drugs like that do not have any adverse effects is disingenuous. Morphine cases respiratory depression. I know that there are some studies in very, very sick patients that show that it does not increase mortality, but in those patients, the patients were very, very sick, and their death was imminent regardless of whether they were on morphine.

  • 11:34:41

    WARRAICHHaving said that, if you do have someone who has intractable pain, and you start them on a morphine drip, you will cause them to stop breathing at some point. So to say that...

  • 11:34:51

    BYOCKThat's just not true. That's simply not true.

  • 11:34:56

    REHMAll right, let's just take a very short break here. You're listening to the Diane Rehm Show. I do want to open the phones and let our listeners engage with our guests, 800-433-8850. First to Alexandria, Virginia, to Yetta, you're on the air.

  • 11:35:24

    YETTAThank you for taking my call, Diane.

  • 11:35:26

    REHMCertainly.

  • 11:35:26

    YETTAI'm a huge fan. Alzheimer's was mentioned. I am the daughter of a 76-year-old woman with advanced Alzheimer's. She's somewhere between stage six and seven. She is third generation in a row. Her mother and her grandmother before her all had Alzheimer's. We talk about suffering. My mother is in care and is cared for very well, at the expense of $10,000 a month for her care, which is huge and a burden that many families cannot assume.

  • 11:36:04

    YETTAAnd she is lost in her world of dementia. She is hugely anxious. She has reverted to her native tongue of Danish, cannot really communicate with anyone. She is still verbal but in Danish only so has a very hard time making her needs, very simple ones, even going to the bathroom, known to the staff. And, you know, as someone who is looking at this potential diagnosis myself, I am looking at hopefully -- well, I'm including this in my will, in my specific request that if I should be diagnosed, and it is legal to do so, I would like to opt out of a life and many years of suffering because I do believe my mom suffers, she does not understand where she is, why she is there, where my father, who we lost two years ago, is.

  • 11:37:08

    YETTAShe is angry with him for not visiting. It is a huge burden, and there is going to be a national health care crisis regarding Alzheimer's and other forms of dementia as the population...

  • 11:37:21

    REHMAll right, and we will discuss the question of Alzheimer's, which Dr. Byock has already mentioned, when we come back after a short break.

  • 11:40:02

    REHMAnd welcome back. Dr. Ira Byock is with me, from California. He's founder and chief medical officer of the Providence Institute for Human Caring in Torrance, Calif. Emeritus professor of medicine at Dartmouth. He's the author of "The Best Care Possible." And from a studio at Duke University in Durham, N.C., Dr. Haider Warraich. He is a fellow in cardiovascular medicine at Duke University Medical Center. He's the author of the forthcoming book, "Modern Death: How Medicine Changed the End of Life."

  • 11:40:52

    REHMAnd Dr. Warraich, you've heard Yetta's comments about her concern regarding herself and what she believes she may eventually inherit in the way of Alzheimer's disease. What are your thoughts about that? And if an individual who knows or believes that he or she may develop Alzheimer's does not want to put her family through what her mother has been through, what are your thoughts on that?

  • 11:41:33

    WARRAICHI think, Diane, Yetta brought up something that's a really, really difficult situation. You know, I've -- one of the things that, you know, she sort of pointed towards is, you know, this epidemic of caregiver burden in this country that is just not -- has not been recognized in any sort of formal way. And patients with Alzheimer's, you know, as she's pointed out are very, very resource heavy, both for family members and -- but I don't know if I'm ready to sort of take any type of position with regards to assisted death for these patients right now.

  • 11:42:09

    WARRAICHI mean, this is a difficult problem that, you know, we need to take care of. You know, under the existing laws, you know, patients who are at the risk of developing a disease like Alzheimer's can put in their will, they can fill out forms, such as post form in which they can make it clear that they wouldn't want life-sustaining therapies, that they wouldn't artificial nutrition or hydration. But as far as the question of, you know, whether patients with Alzheimer's should be allowed to have access to assisted death or aid in dying, I just don't know if you have enough data or enough demonstration of this in other countries or here that I'm willing to take a position one way or another on that.

  • 11:42:51

    REHMDr. Byock, I would assume you feel very strongly about that.

  • 11:42:58

    BYOCKFirst, my heart out goes out to Yetta and her mom. This is a truly difficult situation and it's affecting many hundreds of thousands of people across the country.

  • 11:43:06

    REHMMillions, in fact.

  • 11:43:08

    BYOCKProbably millions. I work day in and day out trying to improve care for people in just those sorts of situations. The fact is and the public needs to know that there are enlightened models of care for people in these situations. They're just not very available in the United States. You have to look long and hard for them. The assisted suicide movement, of which you're a part, Diane, is thinking about these things.

  • 11:43:36

    BYOCKThey say on the surface, Diane, excuse me, Barbara Coombs Lee will say that this is not something that is part of their political agenda, but in fact, I read their blogs and their list serves and it is something that's being talked about and planned for for a future day. Barbara Coombs Lee has in fact said, "It is an issue for another day, but is no less compelling." Now, I just want to redirect us.

  • 11:44:02

    BYOCKIf we could talk about the two questions that I opposed, why are people still dying badly and how can we help people to die well in the United States. We could, in fact, for instance, not lose our outrage at the terrible state of nursing home care in the United States and put through legislation to require adequate staffing of nurses and nurses' aides to insure that they're paid a living wage, to start rescind the medical -- the nursing home licenses of nursing homes that score lowest in quality and only awarding new licenses to nursing homes that are -- have these enlightened models, like the greenhouse model or the plain tree model.

  • 11:44:43

    BYOCKI hope our listeners will start to search those on the internet. If anybody out there hasn't seen the movie, "Alive Inside," go to Netflix or Hulu and watch at least a clip from "Alive Inside," and you'll see that indeed enlightened care for people with Alzheimer's disease doesn't cure the disease, but it can restore their comfort. And it can actually, believe it or not, allow them to experience some joy, even with late-stage Alzheimer's.

  • 11:45:14

    REHMAll right.

  • 11:45:15

    BYOCKSo there are things we can do. We're just not -- we're looking for the solutions in the wrong places right now.

  • 11:45:20

    REHMAll right. And, Dr. Warraich, you have said that the language we use in regard to death with dignity or physician-assisted dying should not include the word suicide. Talk about why.

  • 11:45:45

    WARRAICHYou know, Diane, I've thought about this in -- on both sides. You know, when I wrote my op ed for the Times, I used the word assisted suicide. And the reason I used suicide there was because, you know, I think that if you believe in the principle and if you believe that what -- that, you know, patients do have this right, then, you know, you can argue that, you know, that people should be able to accept this no matter what it is called.

  • 11:46:12

    WARRAICHAnd even if, you know, people who support, you know, terms such as aid in dying, assisted death or, you know, death with dignity, they want to sort of support these terms. You know, people who oppose these positions will use whatever words they can use to cause people to be fearful. They will use euthanasia, they will reference, you know, Nazi experiments. They will go to whatever extent it is required to get people to be afraid.

  • 11:46:41

    WARRAICHHaving said that, I think words do matter. Because what I truly believe is that when we use the word suicide, we are insulting these people who are in these very, very difficult situations. People who have lived long lives, the average life of a person opting for assisted death in Oregon is 71. These are people who have lived long lives, productive lives and they're not suicidal people.

  • 11:47:08

    WARRAICHThey know that they will die. So reducing something that they have thought long and hard about and calling it suicide or attaching any sort of other label to that I think is insulting. And that's why I think particularly for this, for the sake of the people who are suffering, I think both sides should be very careful about the words they use.

  • 11:47:30

    REHMIndeed. And let's take a call from Steven in Bristol, Tenn. You're on the air.

  • 11:47:38

    STEVENThank you so much, Diane. I'm gonna truly miss you when you're gone.

  • 11:47:43

    REHMThank you.

  • 11:47:44

    STEVENThis is an incredibly -- I have a lot of feelings about this subject because I've had members of my family that have died. And my sister-in-law that died several years ago looked me in the eye and she said, "Steven, if Dr. Kevorkian was not in prison I would call him." Medication can only go so far. She had extreme pain with pancreatic cancer. She lived much longer than any other patient of her doctor. She had the very best care in the Atlanta area. And to say that from Dr. Byock, to -- I don't think he's really thinking.

  • 11:48:22

    STEVENOr he hasn't maybe experienced this, that medication will only go so far. For her to actually have any type of ability to communicate with me or her husband, my brother, she would be in extreme pain. There was no little bitty, oh, I just have a little bit. And I think palliative care is incredibly important. One of my best friends in Fresno, Calif., and he is -- he's doing that. So I think that there needs to be a coming together of the two sides that is not -- it doesn't have to be polar opposites.

  • 11:48:54

    STEVENSo I'm wondering if Dr. Byock has actually seen these cases that medication is not gonna work. It is not. Just making them comfortable and going home, because I don't think history has proven that death at home right now is off more -- is worse than it has been in the past. So I just think that assisted death with dying is absolutely crucial for people that are in the late stages of life.

  • 11:49:28

    REHMDr. Byock?

  • 11:49:29

    BYOCKI'm sorry for your losses, Steven. I have indeed seen people die of pancreatic cancer. My own father died of pancreatic cancer. I tell his story in the first book I wrote called, "Dying Well." It's the opening chapter. I understand that there are limits to our abilities to control human suffering. But let's just distinguish this. There is no physical pain that we cannot make better. We can alleviate all physical distress. That -- I don't say that to foreclose this conversation, but it's the pain of dying, it's a pain of losing everything that we love that we cannot alleviate.

  • 11:50:12

    BYOCKIt's the pain of losing things that are enjoyable in life. I'm not trying to in any way trivialize that. I'm just trying to be accurate here. There is a difference between alleviating suffering and eliminating the person who is suffering. Right? That's different. I think that this issue is one of how much authority we give physicians. And this is one of social policy. I'm in no way judging the completed suicide of any individual. Who would I be to make that judgment?

  • 11:50:47

    BYOCKBut as a basis of social policy, here we are giving doctors lethal prescriptive authority in California, now in Colorado. Yet we haven't changed their medical education or their training in residency. We haven't changed staffing of palliative care in hospitals, which in most hospitals these days is quite threadbare. We're still poorly staffing our nursing homes. You still have to give up treatment for your disease to get hospice care. And the quality of hospice care has become uneven, as it's become part of the corporate practice of medicine, with most hospice programs now being for-profit, traded on Wall Street.

  • 11:51:30

    REHMAll right. Dr.…

  • 11:51:31

    BYOCKSo I just think that we need to direct our social policy to things that we can fix to alleviate suffering and allow people to die gently.

  • 11:51:39

    REHMAll right. And Dr. Byock, I just want to raise with you, as you said earlier, my listeners know you know everyone perhaps has ever listened to this program knows that I am in favor of physician assisted dying with dignity. I was very interested in Governor Jerry Brown's closing comment when he signed the law that the California legislature had passed. I'm paraphrasing here, but what he said was -- and this, of course, from a Jesuit.

  • 11:52:28

    REHMHe said, I do not know what I would choose when the time comes. I do know, however, that I would not like for someone else to make that choice for me. So my question to you, you clearly do not support physician assisted death, but what is the harm in letting each person choose for him or herself?

  • 11:53:07

    BYOCKSo, once again, there's a difference between suicide and physician-assisted suicide.

  • 11:53:13

    REHMWell, I'm not talking about suicide, sir. I'm talking about death with dignity. I do believe words are important and we're not talking about suicide.

  • 11:53:29

    BYOCKSo I believe words are important, too, Diane. And you're use of the term dignity actually casts an aspersion upon people who are frail, unable to attend to their own needs, including eating and toileting themselves. I believe that all people are dignified. That dignity is inherent. People do not have to die with their boots or their makeup on to be dignified. One of the things that troubles me most about this debate is the assumption of the term death with dignity.

  • 11:54:01

    BYOCKThe people we care for in hospitals and nursing homes are dignified. Our job as a caring, loving society is to allow them to see their dignity reflected in our eyes…

  • 11:54:13

    REHMAnd you're listening to "The Diane Rehm Show."

  • 11:54:13

    BYOCK…to feel their dignity in the way they're touched.

  • 11:54:17

    REHMDr. Warraich, would you like to comment?

  • 11:54:20

    WARRAICHI'll offer a few points. One is that, you know, I think this is not a political movement. This is personal movement. The caller who called in, I think offered a very, very reasonable position that instead of creating a divide between palliative care and assisted care they both need to learn from each other. Palliative care still should be the -- for the vast majority of patients that is a route that they should take. But for a very small fraction of patients for home that is not enough.

  • 11:54:47

    WARRAICHWe need to stop being arrogant. Physicians have been paternalistic for too long. And we have been wrong many, many, many times. And I think in -- at this point, most physicians in the United States, according to large surveys, do support assisted death. The other thing I will say is that, you know, I don't think any of -- calling patients who choose assisted death, calling it dying with dignity does not in any way take dignity away from people who do not choose palliative care, who choose to have everything done 'til the very last moment.

  • 11:55:19

    WARRAICHBut this is how patients who want this route call or consider that this is what dignity means to them. And we need to respect that. This is not about taking dignity away from anyone. But we have to realize that patients with terminal diseases who seek assisted death, for them this is dignity. And I don't mean to trivialize that either, by saying that people want to die with their boots or makeup on I think is insensitive. I think that this is a serious subject and patients have the right to decide what is dignified for them, whether that is palliative care, whether that is assisted death, or whether that is very aggressive care as well.

  • 11:55:56

    REHMDr. Byock, I'll give you the last word.

  • 11:56:01

    BYOCKWell, I think that very statement that you made, actually both of you, would be hard to hold back from people with Alzheimer's disease, people with crippling arthritis, people who are in chronic pain, but aren't dying. They have rights, too. What I'm trying to do is give them the right to doctors who have been well trained and can listen to them, can attend to their physical pain and can attend to their inherent dignity.

  • 11:56:30

    BYOCKI think that this is social engineering that we're talking about. And we should really be having a conversation about why people are still dying badly and how we can change laws, changed education, change insurance so that we can reliably give people the confidence of being able to die well.

  • 11:56:48

    REHMAll right. And we'll leave it at that. Dr. Ira Byock, he's founder and medical -- chief medical officer of the Providence Institute for Human Caring in Torrance, Calif. He is the author of "The Best Care Possible." Dr. Haider Warraich is a fellow in cardiovascular medicine at Duke University. He's the author of the forthcoming book, "Modern Death: How Medicine Changed the End of Life." And I thank you both for being with us.

  • 11:57:32

    BYOCKThank you, Diane.

  • 11:57:34

    REHMThanks, all, for listening. I'm Diane Rehm.

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