Having a seriously ill child is among the most difficult things a parent can experience. What one psychologist has learned about supporting families through her work with young cancer patients.
In a video that has been viewed by millions in recent weeks, 29-year-old Brittany Maynard explains her plan to end her life on Nov. 1, 2014. Maynard suffers from terminal brain cancer. Instead of waiting for the disease to kill her, she decided to move to Oregon with her husband and mother so that she could legally obtain a lethal prescription and end her life on a day of her choosing. Currently, her plan is a legal option in only five states. Advocates say it can be a critical component of end-of-life care and should be more widely available. Diane and a panel of guests discuss the debate over “aid in dying,” also known as doctor-assisted suicide. (Watch Maynard’s video below)
- Barbara Coombs Lee President, Compassion & Choices co-author of the nation’s first death with dignity law in Oregon that took effect in 1997
- Dr. Ira Byock Chief medical officer for Providence's Institute for Human Caring, and the author of "The Best Care Possible."
Update: Brittany Maynard Ends Her Life
Brittany Maynard, a 29-year-old newlywed diagnosed earlier this year with terminal brain cancer, went forward with her plan to end her life Nov. 1.
In this video, posted days before she died, she talks about her decision and saying goodbye.
Video: A Terminally Ill Patient On Her Decision To Die
Brittany Maynard, who was given six months to live in April, explains why she has chosen to end her life with medication and why she’s pushing to expand Death with Dignity laws across the U.S.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Following Oregon's lead in 1997, doctors in several states are now legally allowed to prescribe lethal doses of drugs to mentally competent terminally ill patients. Supporters of the so-called aid in dying movement are leading efforts in many other states to adopt similar legislation. Opponents argue there are far better ways to improve palliative end of life care.
MS. DIANE REHMJoining me to discuss care and legal rights for terminally ill patients, Dr. Ira Byock of The Providence Institute For Human Caring and joining us from a studio in Portland, Oregon, Barbara Coombs Lee of Compassion and Choices. We will be taking your calls. Part of the program is always from you so do give us a call at 800-433-8850. Send an email to email@example.com. Follow us on Facebook or send us a tweet. Dr. Byock, Barbara Coombs Lee, thanks for joining us.
DR. IRA BYOCKGreat to be here.
MS. BARBARA COOMBS LEEThank you.
REHMThank you. And Barbara, I'll start with you. Tell us about Brittany Maynard and the choice she's made.
LEEBrittany's an incredible young woman, incredibly self-assured and filled with self determination. She did something that precious few people have the courage to do and that is when she received a terminal prognosis, she asked her doctors what the end would be like for her, what kind of symptoms her tumor had in store for her. Most people don't do that. But she did. She had the courage to face it and she realized that she did not want to let the tumor torture her the way it was likely to torture her before she took her life and that she wanted to gain some control.
LEESo she moved her family to Oregon. She found excellent cancer care in Oregon. She established a new home. She found a palliative care physician and she became eligible for the Oregon Death With Dignity Act and went through all of the hoops, all the procedural safeguards in order to obtain the medication.
REHMTell me how a patient becomes eligible for this kind of treatment?
LEEIt's a conversation and a decision between a patient and the patient's attending physician, whether or not they are qualified. It starts with a diagnosis and a prognosis that, in all likelihood, with or without medical treatment, the person is likely to die within six months. That starts the potential eligibility. And then, there are a lot of findings that a physician needs to make, and attestations the physician needs to make to the state that the person is of sound mind, that they're not being influence or coerced, that they have considered options, that they know about palliative care and hospice care and perhaps are already in hospice care, that they are not suffering from depression or other psychological illness that would impair their judgment.
LEESo that physician begins the process by finding those things out, documents the first request and that starts a clock for a waiting period of 15 days. During that waiting period, the physician then sends the patient to another physician who is skilled in treating the underlying disease. That second physician does the very same findings, the very same consultation, makes the same attestations to the state. In the meantime, the patient fills out a formal request form that then needs to be signed by two people who attest that indeed of sound mind, mentally competent, no coercion, no influence, et cetera, et cetera.
LEEThen, and only then, after all those things have happened does the patient receive a prescription. Some patients never do fill the prescription. They feel so relieved and empowered just having it and some people fill it and they keep the medication and about, oh, a little over a thousand people have ingested that medication in the last 16 years.
REHMI see. Turning to you, Dr. Ira Byock, you say that what we're essentially dealing with is an end of life public health crisis. What do you mean?
BYOCKYou know, in the last two weeks, the IOM, the Institute of Medicine, has released yet another report called "Dying in America" as a follow-up to their 1996 report, "Approaching Death." Once again, I mean, it should've been called "Dying Badly in America." They have reiterated grievous deficiencies in the way people are cared for through the end of life. Deficiencies in the way -- physician incentives and the payments to health systems aren't made, the way physicians are trained, the way we staff places like nursing homes, all are woefully deficient.
BYOCKWhile physicians and others have very good intentions, it turns out that we are inadvertently, but really irrefutably, contributing to the suffering of many seriously ill people and their families.
REHMSo help to understand your position regarding Brittany Maynard.
BYOCKWell, you've jumped a long way just then, Diane. I mean, I think this is a Howard Beale moment. You know, we should be having a public health hearings. We should be -- the president should be naming a czar to take care of the changes, the transformations in healthcare that are needed to take good care of seriously ill people. What we're discussing today, frankly, is, again, whether physicians should write lethal prescriptions, whether they should have the power of writing lethal prescriptions.
BYOCKI think that is bad public policy that doesn't fix the roots of the problem that are contributing to the suffering of seriously ill and dying people.
REHMI want our listeners to know that last night, Brittany Maynard posted a statement on our website. I'm going to read to you a portion of that statement. I think it's an important element in this discussion. Brittany Maynard posted this statement on our website last night. You can read it for yourself at drshow.org. I'm going to read part of it for you.
REHMShe says, "I am Brittany Maynard and it concerns me that Dr. Ira Byock will speak on my "behalf" at all again. I watched a special on PBS where this same individual spoke about my case as though he knew personal details about me, saying some things that were quite frankly not true. For example, he said a gentle death would be available to me easily through hospice, unfortunately that would be after a great length of time, with lots of suffering, physical and emotional, and loss for my young body.
REHMHe is right, this is not being accomplished successfully for many terminally ill Americans. This needs to change. I agree with him there. But perhaps most disturbingly, Byock claimed that Compassion and Choices had somehow taken advantage of me through "exploitation" and that I feel compelled to die now based on public expectations. I do not, this is my choice. I am not that weak.
REHMThe day is my choice. I have the right to change my mind at any time, the patient right that is critical to understanding Death with Dignity. The claim of exploitation is utterly false, considering I had gone through the entire process of moving, physician approval for Death With Dignity, and filled my prescription before I ever even spoke to anyone at Compassion and Choices about volunteering and decided to share my story.
REHMI support the organization because I support the cause. I believe this is a healthcare right and choice that should be available to all terminally ill Americans." And once again, that is the statement made by Brittany Maynard. It's posted at our website, drshow.org. Dr. Byock, I know you want to comment.
BYOCKI certainly do. It's personally hard for me to hear that I've caused this young woman more distress. That's the last thing I would want to do.
BYOCKI spend my days and my career trying to alleviate suffering. I do, in fact, disagree with a number of the things that she said. I want to be clear. I was invited to speak on the news hour and to give a contrasting opinion to Barbara Coombs Lee. I was invited here this morning, which I thank you very much for.
BYOCKI respect Brittany Maynard and I wish her only well. I sincerely wish her well. I respect her enough to recognize that she has stepped into a very public debate. She is using her illness to make meaning in this sense and to contribute to the political cause that Compassion and Choices is out in front of and I respect that, too. But I believe that Compassion and Choices is promoting a social policy change which, while masquerading as progressive social policy, is actually regressive social policy and dangerous.
BYOCKAnd I have to speak to that. So, you know, one of the things I disagree with is that Brittany Maynard has just said again that she thinks it's her personal choice. But, you know, physician-assisted suicide is not a personal act. It's a social act. Physicians aren't personal. We are trained by society. We are licensed by society. We are certified by boards that represent society and we're paid by society. So when a physician writes a lethal prescription, it's a social act.
BYOCKI'm trying really hard to address the woeful deficiencies of physician training and certification and licensure.
REHMDr. Ira Byock, chief medical officer of The Institute for Human Caring of Providence. Short break here, we'll be right back.
REHMAnd we're back talking about the case of Brittany Maynard. And even to say a case simply puts it in a non-human realm. We're talking about the life of Brittany Maynard, a young woman who is suffering from inoperable brain cancer. For those of you who just joined us, she moved her family to the state of Oregon where an aid in dying is legal and that is that a physician after Brittany has undergone several examinations and discussions with various doctors and is determined not to be suffering from depression but is suffering from a terminal illness.
REHMBarbara Coombs Lee, you fill out the rest. She is provided with medication with which she could take her own life at the time of her choosing. Is that correct?
LEEShe could and she may not. You know, many people do not. And what Brittany Maynard has done is achieve control over a disease that has so far one nothing but control her and essentially said to her disease, you will take from me only so much before you take my life. And that is very empowering. But we said as much on her video. I feel empowered. I feel enormous peace of mind. Why would we want to deprive her of that?
LEEYou know, her situation -- she as a person, her family, you can't just arbitrarily separate them from social policy and say, well, yes, our sympathies are here. But when we turn to social policy, we have to turn away and abandon Brittany Maynard and do something else that supposedly is best for society, but it's not.
REHMAll right, and...
LEEPalliative care doesn't suffer in Oregon and there has been -- no harm has come from giving people like Brittany Maynard dominion over her life.
REHMAll right, here's an email from Vicky in Texas, Barbara. She says, "While I do endorse the death with dignity movement, I am concerned about the slippery slope it may engender in that terminally ill people will feel guilty if they decide to end their lives without such intervention. What do you make of that, Barbara?
LEEYou know, in my experience, there's new concerns about slippery slopes and people feel obligations and duties. That happens in the underground. That happens in the covert. That happens when people are not allowed to voice their dearest wishes openly and have open conversations with their family and their clergy and their physician about what they're facing and about what the real challenges and opportunities might be.
LEEWhen you bring that process of transparency, that's when we can make it a good process.
REHMAnd Dr. Byock, is that something you are truly concerned about?
BYOCKI'm very concerned about the slippery slope and the cultural message of this movement. You know, when it's began, the movement to legalize physician-assisted suicide in Oregon was touted as a way to address those very few cases when physical suffering could not otherwise be relieved. In fact, however, we can alleviate much physical suffering. And when you look at why people like Brittany Maynard are choosing the death with dignity lethal prescription, it is not about physical suffering.
BYOCKOver 85 percent of them, like Brittany, are choosing to die, hasten their death because of loss of control, because of a sense of feeling of burden to their families, you know, because of losing the ability to enjoy life. This is from easily obtainable data that any of our listeners could get from the Oregon State Department of Health. We're in a cultural situation now in which people are feeling that their lives -- the quality of their lives are being commodified.
BYOCKThe worth of human life is being commodified. We have Robin Williams who ended his life because of early Parkinson's disease. We have Zeke Emanuel who, although he's against physician-assisted suicide, has said that he'd like to die at age 75 because he will be past his prime at that time. So as we look at what the slippery slope really is, I would look to the fact -- the verifiable fact that people are choosing to die because of true suffering, no question about it, about things like loss of control, loss of ability to enjoy life being a burden.
BYOCKIf we look at Holland and Belgium, where these same laws had been in existence for a couple of decades, people are dying because they've lost the interest in living. People are dying because of chronic pain and ringing in their ears or loss of eyesight. Now, this is in a first developed -- you know, first world country with universal health insurance, very good health care and it's happening legally, where 2 percent now of the population is being euthanized not those solely who are terminally ill.
BYOCKAnd I actually would love to hear from Barbara what you say to somebody like Brittany who simply is suffering at that level but isn't terminally ill? Do you say to them, we can't help you because you don't -- you fall outside of the laws and the regulations of Oregon?
REHMBut as I understand it, and Barbara, perhaps you can clarify, Brittany has been told she has a severe form of brain cancer, inoperable. Tell us the rest.
LEERight. I don't -- any question that Brittany Maynard meets the eligibility criteria for the Oregon Death with Dignity Act. She has a tumor that is likely to kill her within six months. She is terminally ill. If she were not terminally ill, that's right, Ira, she would not be eligible for the Oregon Death with Dignity Act and we don't have any trouble telling people that. I don't know why it makes a difference whether or not Brittany's suffering is unbearable right now at the time when she becomes eligible for -- to receive her medication.
LEEThe fact is that she has agony and torture awaiting her if she lives out the course of her illness. She will have an enormous amount of pain. She knows that, nausea, vomiting, seizures. I don't think it's our place to denigrate or diminish, trivialize the amount of emotional suffering that is caused by that anticipation or the amount of real suffering that she, you know, may or may not be willing to accept and endure. You know, that's her decision.
LEEAnd that's the big difference, I think, between Ira and me. I trust Brittany and people like her to make the decision about their own suffering in the course of their dying and when they've had too much.
REHMAll right, I'd like to read to you an email from Carolyn in Indiana who says, "I've been a hospice volunteer for many years and so have known terminally ill patients who've ranged in age from early 30s to late 90s with support and pain control. All have died without major suffering. However, I personally belong to the Final Exit Network, because I also know people who literally would rather die than face the indignity and loss of control that long terminal condition inevitable requires." Dr. Byock.
BYOCKExactly. So the Final Exit Network, which you can read and learn about if you look at PBS "Frontline's" "The Suicide Plan" is at least honest about saying that the right to die should not be predicated on some physician determining that you're terminally ill. What I was trying to say is, I know people, patients, who are suffering to the very extent that we've been discussing here today that -- who have had severe strokes that cause them central nervous system pain, difficulty moving, difficulty taking care of themselves.
BYOCKI know elderly people with severe arthritis that cause them severe suffering. If we are going to say that a lethal prescription is a socially appropriate response to that level of suffering, it becomes a broad audience for that. I think, as a country, and certainly as a health care professional, and I'm, by the way, very proud of being a physician. You know, I think physicians act with good intention.
BYOCKBut in a sense, giving a lethal authority to physicians is like giving a three-year-old a hammer. You know, the whole world starts to look like a nail. And that's what's happening in Holland and Belgium. So, you know, how do we address the suffering of somebody who is not terminally ill, doesn't have that six-month prognosis but is suffering because of the loss of, you know, the sense of the future, loss of being able to do the things that they used to do?
REHMAt the same time, Barbara, do I understand correctly that physician prescriptions have been provided to a great number of people in Oregon but only a very small minority has actually used them?
LEEYes. About 1 in 50 begins the -- 1 in 50 dying people in Oregon begins the conversation with their doctor, asking would I be eligible? Would you participate, et cetera, et cetera. And I think that those people derive an enormous amount of peace of mind and comfort from having that conversation. In the end, 1 in 500, you know, so a factor of 10 actually ingest the medication in order to die. So there's a huge amount of quality of life improvement in peace of mind that happens even before a person receives a prescription.
REHMPeace of mind, Dr. Byock.
BYOCKSo what they've shown them is that this law is used by so few people that it's an essentially irrelevant to the serious woeful deficiencies that the institute of medicine has documented again and again. Oregon and Washington state are not utopia in this regard. We're still graduating physicians who have not been adequately trained to treat pain and to counsel seriously ill and dying people. We are still not staffing nursing at anywhere near an adequate level so that elderly people look at the future and they think, well, I'm going to be undignified and I'm going to be treated in an undignified way.
BYOCKAnd they're basically right. None of the -- none of the woeful deficiencies have really been corrected by this law. I want to talk about that. I want to -- it's as if we've all been called to a burning building and there are suffering people yelling for help. And instead of talking about putting out the fire, we all, this morning even, are captivated by a fist fight on the front lawn. This is a small issue, frankly, in a sense. And it's sucking all the oxygen out of the room.
BYOCKThe op-ed pages and the congressional hearings and shows like this, we're not talking about how to actually fix things and make this world a safer place for seriously ill and dying people.
REHMDr. Ira Byock, and you're listening to "The Diane Rehm Show." I want to bring our listeners into this conversation. First, let's go to Kelsey in Alexandria, VA. Hi, you're on the air.
KELSEYHi, Diane, thank you so much. I apologize if my thoughts aren't perfectly clarified. I just watched my partner's mother go through a glioblastoma level four, which I believe is what Brittany is going through. I watched her go from diagnosis to death, watched every stage of it. And I can tell you, it is not a little issue for a person and a family who are suffering through that. And for my choice, if that ever happen to me, I would be moving to Oregon and making that choice.
KELSEYAnd I would also say there's a little bit of a parallel to me between the reproductive rights issues and this issue, where if you don't allow folks to make their choice in a safe and control environment that is legal, you force folks to do things like the family has to pull the plug or the family has to try to literally overdose their loved one, which was actually seen has happened with parents coming forward saying their doing that, which is a horrible scenario.
REHMIndeed. And, Barbara Coombs Lee, tell me what the goal of Compassion & Choices actually is.
LEEThe goal of Compassion & Choices is to improve care. And we believe that empowering people does improve care. Hospice and palliative in Oregon thrive as the best palliative and hospice care in the country because the people, dying individuals and their family members, feel empowered. They feel as though they can have frank conversations and become knowledgeable. And palliative care benefits from that.
REHMAnd tell me about the movement across the country into various states.
LEEThe movement is vibrant and the movement has, quite frankly, gotten a tremendous boost from Brittany Maynard because she has put a face on the public policy, on the social policy that moves people into positions of involuntary suffering, involuntary agony or, as your caller mentioned, acts that are desperate. You know, it's not only family members who act, I mean, people, this is -- we're a gun society. And so terminally ill people kill themselves with guns all the time.
LEEThey jump from balconies and they kneel in front of trains. There's enormous amount of suffering and devastation going on now because our social policy is not kind. It is not compassionate. It does not respect the people of America. It doesn't respect dying people. You know, I know that Dr. Byock comes from a place of beneficence and that's where his ethical core is. But, you know, beneficence has a way of getting our control and becoming paternalistic.
LEEAnd saying to people like -- like Brittany, well, I actually am a better judge of your suffering and will make you feel better than you are. And then that paternalism becomes oppression and then the oppression become tyranny, which is what we have now. We have a collaboration between government and medical establishment in power conspiring essentially to deprive terminally ill people of the power and the control they crave.
REHMDo you see that changing? Tell us what's happening in the states like Oregon and Washington, and now several others?
LEEI do see it changing. Well, a public figure like Brittany Maynard who gives a face to the social policy under which we operate now is very, very helpful. So right now, there are bills pending in Connecticut and New Jersey. And I think that the lawmakers in those legislatures pay close attention and will have Brittany Maynard on their minds when they debate those bills and come to vote on them in 2015.
LEEThere's a vibrant active campaign in California, Brittany's home state. And the lawmakers there don't want to be a refugee state, a place where the people of our state can't find the peace of mind and comfort that they need in their dying days here. And so they need to move to our neighboring state, Oregon, to find that. I think that can be very compelling to lawmakers.
REHMBarbara Coombs Lee, she's president of Compassion & Choices. We'll take a short break here. More of your calls when we come back.
REHMAnd welcome back. On the line with us from Oregon, Barbara Coombs Lee. She's president of Compassion and Choices. She's co-author of the nation's first Death With Dignity law in Oregon that took effect in 1997. Dr. Ira Byock is here in the studio. He's chief medical officer at the Institute for Human Caring of Providence Health and Services. He's author of a book titled "The Best Care Possible." Dr. Byock, I know you want to respond to some of the points that Barbara Coombs Lee made.
BYOCKWell, and I was moved by what Kelsey said from Alexandria. I feel like I've been accused of diminishing people's suffering and being paternalistic. And it's ironic because within the health systems that I've worked in and the institutions, I've been known as a firebrand, calling attention to bad care. I know, from the teams that I've worked with that people get really excellent care, people with glioblastomas can get very excellent care and, in fact, indeed, be assured of dying in a gentle way.
BYOCKIt's not easy. I don't mean in any way to suggest that we can sanitize dying. We cannot. This is hard stuff. It sucks, to tell you the truth. Being ill is awful. But we are just doctors. Instead of sounding arrogant, I'm trying to defend the humility and the proper limitations of the medical profession. We are not gods. We are just here to serve. As a medical educator, I teach physicians in training all the time that there are proper limitations. You know, we don't let bankers steal our money. We don't let police abuse suspects and we don't let doctors kill patients.
BYOCKWait. Let me get -- when I teach medical students about this, I say, these prohibitions were not put in place to protect us. They were put in place to protect the public from us.
REHMBut what I want to say here is in a tweet, "Belgium and the Netherlands practice euthanasia, which is not aid in dying, and Ira Byock is conflating the two."
BYOCKI'm not conflating the two. The caller is absolutely correct. Just please look at PBS Frontline's "The Suicide Plan." In this country, we are practicing all of that, frankly, and Barbara seems to be a supporter of that. I'm talking about social policy that opens the door to the slippery slope. When you talk about people's personal rights to die, you know, then the people who have those rights are basically all of us. But the Supreme Court -- you can't find a right to suicide in the Magna Carta or the Declaration of Human Rights or the U.S. Constitution.
REHMBut you can...
BYOCKWe do have a right to good healthcare, which we're not getting, you know.
REHMAnd that's where I want to take a call from Kelly in Littleton, New Hampshire. Hello, Kelly, you're on the air.
KELLYHi. I am a hospice and palliative care nurse in New Hampshire and have actually worked with Dr. Byock several times. And Dr. Byock, you are an amazing, amazing physician. You are certainly a crusader against bad care and I've always enjoyed taking care of your patients. But unfortunately, you still are the exception and not the rule. I have attended several families on very difficult journeys where even as a skilled certified specialist, I was unable to get the orders and the prescriptions I needed, depending on who was on call, what their personal -- were, what their education was, all the way down to the pharmacist at the local pharmacy refusing to fill prescriptions of certain types because they weren't familiar with the dosage or they were too afraid to fill the prescription.
KELLYAnd I have attended deaths that were horrific because people didn't have access to the right care. I think allowing somebody to have that piece of control in their hands rather than gambling that they will definitely have the care that's appropriate while they're dying, I think, alleviates so much of the fear that goes into death and dying. And, you know, as you're pointing out, so few people actually end up utilizing the choice. I understand the slippery slope and the ethics and everything else along with it, but it's hard to watch...
BYOCKSo here, we have an example -- thank you, Kelly. It's nice to hear from you. Here we have an example of something that really does need public conversation and that is the moral distress of caregivers, of physicians and nurses particularly. I am struck by how many nurses leave the field of intensive care because of moral distress, being unable to morally come to work and provide the sorts of treatments that they are asked to do day in and day out to people who are clearly dying and where the treatments have no rational basis.
BYOCKAnd I've not, in recent years, been struck by how many physicians express moral distress. We're all victims of a healthcare system that's really a disease diagnosis and treatment system. We need to change this and we can change this. Somebody's hair ought to be on fire with the story that Kelly just told, that, you know, you can't get doctors to answer the call, to give the right medicines and you can't even get pharmacists to fill it. What aspect of that does legalizing physician-assisted suicide fix? You know, let me just say, as a social progressive...
REHMI want to let Barbara talk as well, Dr. Byock, so hold off there for just one minute. Barbara, in states where it's legal, once the patient has the prescription from the physician, is it legal for that doctor or someone else to help them take it?
LEEWell, the patients have to self-administer the medication.
REHMThat's what I thought.
LEEAnd, you know, many people do, you know, receive excellent palliative care. Anyone who's seen the movie, the film "How To Die In Oregon," which has the story of Cody Curtis, a woman who was dying of liver cancer and her big problem was pain, of course, but also (unintelligible) a great big (word?) in her abdomen. But she originally thought that she would probably want to die because of the severity of her suffering in May.
LEEShe got good palliative care. She didn't die -- she didn't take her medication until a few days before Christmas. No one is denigrating hospice and palliative care here. You know, these are good people doing wonderful work, but they're not -- they don't have miracles in their pocket and they can't alleviate some of the agonies, some of the tortures that people consider worse than death. And, you know, without being too graphic or technical, there are, you know, foul open wounds, there are cancer tissues that, you know, fill the mouth and the pallet.
LEEThere's pain, nausea, vomiting, seizures. Yes, they can be palliated, but I think the people need to understand when Dr. Byock says anyone can die peacefully, he means putting someone in a coma. We need to put someone in a coma in order to get ahead of their symptoms. No one really knows what palliative sedation feels like and for some people to live the last 10 to 14 days in a stupor or in delirium, half conscious, unable to move or speak, that's their worst nightmare and so (unintelligible)
REHMDr. Byock, I want you to speak to that.
BYOCKSo we have a lot of work to do, clearly, because I agree with Barbara, who, I think, by the way, is well intentioned. She is a good person. She's simply wrong on this piece of social policy. I think...
REHMWhy is she wrong? Why is she wrong to say that Brittany Maynard and my husband don't have a right to choose when they want to die?
BYOCKThere's a difference between suicide and physician-assisted suicide. This is social policy. There's a difference between alleviating suffering and eliminating the sufferer. And once you open that slippery slope, a lot of people qualify.
REHMBut eliminating assumes that there is an eliminator and there is no eliminator present.
BYOCKYes, there is. I disagree with you. There is a physician trained and licensed and paid by society who's writing that lethal prescription.
REHMWriting that prescription, but I am free to take it or not.
BYOCKSo, you know, this is a little bit silly because there are ways for human beings to die that don't involve physicians. Why not keep the physician out of this because physicians...
REHMJump off a bridge or shoot oneself?
BYOCKOh, come on, please, please.
REHMWell, really. Jump off a...
BYOCKIt's not that hard to kill a human being. Again, please watch the Frontline "Suicide Plan." There are industrial gasses that are readily available and inexpensive. I don't want to use my time on national radio to talk about the physiology of ending human life, but you can Google it about 15 seconds.
REHMBut if one wants to end it peacefully, without pain and in the presence of people one loves...
BYOCKRight. That's what I do day in and day out. I mean, we care for people well, courageous people, by the way, who die gently surrounded by their family without ending their life prematurely. We're talking about social policy here. We're not talking about a purely personal and private act where I would have no business, you know, injecting my thoughts. Let me just say that as society, let's face it, it's far simpler and less expensive to make somebody dead than to care well for somebody who is seriously sick.
REHMAnd you're listening to "The Diane Rehm Show." Barbara, do you agree with that last statement of Dr. Byock's?
LEEWhat I would want to say is to have a physician say, here's a person who probably has the autonomy and the understanding to want to die, but shouldn't have help from their physician, let them Google it and let them go and inhale a nerve gas. That's abandonment.
BYOCKNot true. Not true. It is a way to stay involved and respect the proper limitations of a physician's role. We are not all things to all people. And once you say that people who are terminally ill can die, well, aren't we all terminally ill in a certain way?
BYOCKAnd if we're suffering, if I'm suffering out of severe pain, shouldn't I have the right -- you know, I got angry letters to the New York Times. I posted a 400-word essay on the New York Times in which I talked about the people dying in the Netherlands of loss of sight or because of tinnitus, ringing in the ears, and I was castigated by many supporters of Compassion and Choices for not recognizing that level of suffering. But I do recognize that level of suffering. I simple recognize that they're not terminally ill and they are exemplars of the slippery slope.
REHMBarbara, tell me what the future is for Compassion and Choices and laws across the country? Where are you most likely to see those laws put into place?
LEEThe Death With Dignity Act in Oregon hasn't changed one iota in the 20 years since it was passed and there's no movement toward a slippery slope. Dr. Byock is incorrect in citing European countries that actually passed their laws after Oregon and now the UK is looking at the Oregon model. I think the Oregon model is the way of the future, that the control must reside with the patient from the beginning to the end. But they deserve the help of a physician. They deserve the medications that only physicians can give you access to because that's the way to ensure peaceful death.
LEEAnd when help lawmakers introduce laws and campaign for them in states, that's what we are looking at, an Oregon model, mentally competent, terminally ill adults who self administer medication at a time and a place of their own choosing when they find their suffering unbearable. That's the model I believe in.
REHMHow many other states are considering this model?
LEEWell, as you know, we have Oregon, Washington, Montana by court order, Vermont by legislature, and New Mexico by court order. Connecticut and New Jersey have bills pending in their legislature, so does Massachusetts. Colorado is likely to have a bill introduced soon and there's a very active campaign in California. So, you know, I think that Brittany Maynard has sparked, you know, a real change and I think that in the upcoming legislative sessions, once these elections are over, more and more politicians are campaigning on Death With Dignity as a plank in their platform.
LEEI think we'll see a real change in the 2015 legislative sessions.
BYOCKYou know, Barbara and I agree on more than we disagree on. I'm a veteran of numerous progressive causes. I'm yearning for bills and citizen initiatives that will actually fix this disgraceful mess that care for people facing the end of life represents. I'm ready to occupy state legislatures and licensing boards until they require medical schools to adequately train doctors how to treat pain, how to talk with patients and listen to patients and work with seriously ill people in making difficult treatment decisions.
BYOCKI'm ready to take to the streets and force home health and nursing home companies to double staffing levels of nurses and aids and pay them a living wage so that they can take good care of our parents and our grandparents and our spouses and our children. I'll donate time and money to repeal ludicrous Medicare statutes that forces terminally ill people to forego treatments for their cancer or their heart failure in order to receive hospice care. There's a lot of truly progressive things that we can do to fix this mess, but giving physicians the authority to write lethal prescriptions is not one of them.
REHMBarbara, tell me how Brittany is today.
LEEWell, she was well enough to write that comment on your website.
REHMLast night, indeed.
LEESo I was really happy to see that.
LEEAnd I think that she has just returned from the Grand Canyon. I know seeing that, I know she's a person for whom nature is enormously meaningful. I think that that really made her spirits soar. So I think she's taking one day at a time. You know, the original date that she had set, I think that's a soft date. I think that if she feels good on that date, she's not likely to take her medication. I would want to leave people with the understanding, though, that Brittany Maynard is not the victim of deficient care.
LEEShe has not -- making her decision, she would not choose to ingest her medication because she doesn't have access to palliative care. She does. All of those deficiencies in the Institute of Medicine report, you know, they were about subjecting patients to futile, unnecessary, unwanted care that cause enormous suffering. That's not Brittany.
REHMAll right. We've got to leave it at that. Barbara Coombs Lee, president of Compassion and Choices, Dr. Ira Byock, he's author of "The Best Care Possible." Thank you both.
BYOCKThank you very much.
REHMAnd thanks all for listening. I'm Diane Rehm.
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