More than 20 states have passed so-called "Right-to-Try" laws that give terminally ill patients access to experimental drugs. What bypassing the F.D.A. could mean for clinical trials, treatment outcomes and patient safety.
The arrest of a Pennsylvania woman for allegedly helping her elderly father die is calling attention to assisted suicide. Diane and her guests discuss the new debate over the right to die.
- Mickey MacIntyre chief program officer at Compassion & Choices.
- Frank Bruni op-ed columnist at The New York Times.
- Dr. Joanne Lynn geriatrician, hospice physician and director of the Altarum Institute Center on Elder Care and Advanced Illness.
- Stephen Drake research analyst at Not Dead Yet.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. A 57-year-old woman is being charged in Pennsylvania for allegedly helping her elderly father die. The story highlights the murkiness in prosecuting assisted-suicide cases. And for right-to-die advocates, it signals a need for new laws that protect those wishing to end their lives. Here with me, Dr. Joanne Lynn of the Altarum Institute Center on Elder Care and Advanced Illness, Mickey MacIntyre of Compassion & Choices.
MS. DIANE REHMJoining us by phone from the studios of WXXI in Rochester, N.Y., Stephen Drake of the organization Not Dead Yet. And joining us by phone from New York City, Frank Bruni of The New York Times. I welcome all of you to be part of the program. Give us a call at 800-433-8850. Send us an email to email@example.com. Follow us on Facebook or Twitter. Welcome to all of you.
DR. JOANNE LYNNGlad to be here.
MR. MICKEY MACINTYREWelcome.
MR. FRANK BRUNIThank you.
MR. STEPHEN DRAKEThank you.
REHMFrank Bruni, if I could start with you, you had a very powerful column on this issue over the weekend. Tell us about Barbara Mancini and her 93-year-old father. What happened?
BRUNIYou know, well, what happened was -- well, first of all, we don't know all of what happened because a judge had issued a gag order for a lot of the main players involved in this. So we had incomplete reporting to begin with, and now we're sort of left in the dark about a lot of what happened. Joe Yourshaw was 93. He was by all accounts terminally ill. He was by all accounts in some degree of pain.
BRUNIHe had by many accounts lost the will to live. And what is certain is that he took an unusually large measure of his morphine one day in his home. A police report says that Barbara Mancini, his daughter who is a nurse, told the police when they arrived and also told a home hospice worker who dropped by and saw her father unresponsive that he had asked for all of his morphine because he wanted to end his life, and she'd given it to him.
BRUNIThat's what she said at the time, according to the police report. Subsequently, she had said, no, that's not the case. She did provide him his morphine, but she didn't know his intent was to commit suicide. She is now charged with aiding a suicide, which is a felony in most states. It's punishable by up to 10 years in prison in Pennsylvania. And there's a debate -- and I think a very important and meaningful one right now -- about whether what she did is something that prosecutors should be spending their time prosecuting.
REHMAnd do you have an opinion on that?
BRUNIDo I have an opinion?
BRUNII think that, you know, it's -- I -- it's very hard to say what law I should say per se. I mean, I think Stephen Drake, one of your other guests, will address this quite eloquently, but one does have to worry, if we give a green light in a nuanced way to aiding suicides, what that could open the door to. That said, I believe firmly none of has that much control over our lives, or none of us has the degree of control we would like to have over our lives.
BRUNIAnd I think when it's clear how somebody wants to die, when somebody is terminally ill, when somebody is in pain, I think an individual deserved the right to die in his or her terms. And I think when the law intervenes in that or when we end up with criminal prosecutions, when there's no suggestion that anything but that happened, I think we are doing something very wrong as a society.
REHMFrank Bruni, he's an op-ed columnist for The New York Times. His piece Sunday was titled "Fatal Mercies." To you, Mickey MacIntyre, there is some debate as to whether she gave her father the morphine to relieve his pain or to help him commit suicide, and that's where the law certainly gets fuzzy.
MACINTYREWell, the law certainly gets fuzzy, and also I think an understating of whether Joe Yourshaw was trying to commit suicide or whether he was trying to control the time of and manner of his death in order to ensure that he has a peaceful death is at question even before you get to the law. This is an individual who is terminally ill, who is already dying from those conditions...
REHMHe was in hospice.
MACINTYREHe was in hospice already. You know, so there was an intention to die and wanting to do that at home and peacefully. And what this overreach of government, as I see it, has done has denied him of his ability to die peacefully. He woke up in a hospital setting which is where he did not want to be with the knowledge -- dying with the knowledge that his daughter who is trying to be helpful to him in alleviating his pain and suffering had been arrested. And that to me just seems preposterous.
REHMShe in fact -- or she said he had a do-not-resuscitate order, and yet apparently, police were called in. Joanne Lynn, help me understand what that do-not-resuscitate order actually means.
LYNNThe do-not-resuscitate order only says that when the heart stops or circulation stops that you should not intervene to try to restart it. And from what I've been able to see of the public record, his heart never stopped, which is not actually surprising because it's actually fairly difficult, as a person who's taking morphine regularly, to take enough to cause death. It's not a terribly lethal drug once you're habituated to it.
LYNNYour body gets pretty good at handling it, so he probably would have simply slept off the time and woken up on his own had police not been called and all those sorts of things. So he probably did not have his heart stopped. He did need a resuscitation. The fact that he was in hospice and was expected to die and he was 93 years and so forth should have led to some questioning about his broader intentions, not just the narrow question of a resuscitation.
REHMWhat do you mean?
LYNNWell, what were his goals now? And if his goals were quite simply to be comfortable and to die where he was and in the arms of his family, that would be a very important directive. That apparently was not relevant to the people who were called who saw their mission as to rescue him.
REHMAnd then they transported him from his home from his own bed to a hospital where he died, what, two, three days later.
MACINTYREFour days later, actually.
REHMFour days later.
MACINTYREYeah. And it's ironic that the hospital actually prescribed morphine to alleviate his pain and suffering while he was there.
LYNNOf course, 'cause otherwise he would have had withdrawal.
MACINTYREYeah. But, you know, I mean just to get to Joanne's point, I mean, the whole idea that, you know, his wishes were violated and his health care proxy was arrested while he was unconscious, you know, so she wasn't even able to bring forward what his wishes were, just adds to the ludicrous nature of this situation.
REHMMickey MacIntyre, he's chief program officer at Compassion & Choices. That's an organization that supports expanding end-of-life options. Dr. Joanne Lynn is a geriatrician, a hospice physician and director of the Altarum Institute Center on Elder Care and Advanced Illness. Stephen Drake, what's your take on this whole story?
DRAKEWell, first of all, I wanted to thank Dr. Lynn for pointing out the reality of morphine overdoses for people who have been taking it for a while. One, you know, aspect of what's -- you know, the press debate around this is, once again, it helps to encourage the myth that, you know, morphine is used to, you know, as an assisted suicide device.
DRAKEI mean, a lot of proponents -- I'm not saying, you know, your guests here has said time after time that assisted suicide is just something that goes on in hospice all the time, meaning using morphine overdoses, which, of course, is a myth. As Dr. Lynn pointed out, it's not a very effective way to cause a death for people who have been taking it for some time.
REHMNow, as I understand it, Stephen, your organization is opposed to assisted suicide. Should these laws be prosecuted? Should this one in particular be prosecuted?
DRAKELet's be clear. What we object to is assisted suicide, you know, enshrined in public policy, which is a formal structure that says that we're going to -- while in most cases, we see as a society suicides as preventable tragedies, we're going to set aside a certain -- certain groups of people and say that for this group of people, not only aren't we going to prevent those suicides, but we see them as rational and as deserving of our help and facilitation.
DRAKEAnd, you know, to us, that's a very -- that's a real aspect of discrimination, especially since increasingly that standard even though it's not public policy at least in the United States -- you're seeing it in Europe -- is applied not just to people who are regarded as terminally ill but to people who are just old, just ill and disabled.
DRAKEAnd when you look at it that way, you know, that preventable tragedies for young, healthy, nondisabled people but, you know, triumphant acts of courage that deserve, you know, that deserve facilitation for old, ill and disabled people, it resembles less something than home and more of discrimination. And that's something that really shouldn't be enshrined in public policy.
REHMSo, as far as you're concerned, should this case be prosecuted?
DRAKENo. And most cases like this aren't. I mean, I don't even know -- and your guests have already gone over some of the main key points on this, that I don't even know how they're going to prove to a jury that, for instance, this man's death was caused by the alleged overdose that was -- resulted from the vial he's prescribed.
REHMAll right. We'll take a short break here. Stephen Drake is with Not Dead Yet, an organization opposed to assisted suicide.
REHMAnd welcome back. We're talking about a case in Pennsylvania where a daughter has been arrested for allegedly supplying her 93-year-old father with sufficient morphine to help him commit suicide. Pennsylvania law says assisted suicide is against the law. So, Mickey MacIntyre, on what basis would you see Pennsylvania prosecuting this case?
MACINTYREWell, I mean, I think there's a variety of factors that go into trying to prosecute a case like this, everything from the legal aspect, which I think Joanne could comment on as well, of trying to associate some sort of cause, that somehow she caused him to be able to commit suicide, which didn't actually happen in this situation. But there are a number of other aspects that come into play here, some of which could be political or cultural, based on where this is happening, based on who is doing it.
MACINTYREI mean, there is some question in this particular case. This case was bumped to the assistant attorney general. There is some issue around the political nature and decisions to prosecute this case based on assistant attorney generals who are held over from a previous administration who might think differently than the AG who is in charge of the state. And then there's the cultural perspective and the moral perspective of a community that might weigh on a prosecutor's decision to try and move forward with this.
REHMJoanne Lynn, you've actually had prosecutors come after you and claim they would prosecute you for murder for removing a feeding tube. Explain.
LYNNWell, back 20 years ago when it was still very rare to think about stopping a feeding tube and we had all manner of people tied down forcibly, getting tubes through their nose, into their stomachs to stay alive, I and a number of other people started offering to patients and families the opportunity not to have that treatment. And prosecutors from various places would tell me in conferences that if I did it in their area, they would prosecute me for homicide. It's a little daunting.
LYNNYou know, you don't really think of yourself as being at risk of those sorts of things, but I think it illustrates how close to the line good behavior is. You know, we're used to having good behavior and exemplary behavior be far from nasty and outrageous and illegal behavior. But in the care of people close to dying, they are always very close.
LYNNSo wherever it is that you think you want to draw the line, you have to recognize that the things you want done and the things you want not done are a hairsbreadth away, which means we've got to have much more conversation about how to understand those. Can you imagine the police showing up and probably a rather hysterical hospice aide or nurse saying, you know, they're trying to kill him, they're trying to kill him?
LYNNAnd just to get a control of the situation, the police call the ambulance, and they get him moved. And, you know, I mean, they're just trying to do things to hold things together for a little while. Had I been the hospice doctor there, I would have said, no, absolutely do not move him. I'll give him -- I'll sit with him and watch to see if he has any trouble breathing. If he does, I'll give him some medication to reverse it. And we'll keep him right here. But there wasn't that person there on scene. So it sort of has blown up in this bizarre way that should never have happened.
REHMFrank Bruni, why did you decide to write about this?
BRUNII decided to write about it because of all the things we're talking about, because it's a very curious intrusion of the public sector into an intimate and private decision. You know, in only four states in this country is assisted suicide legal, physician-assisted suicide, and we're talking about in terminally ill cases. Very -- even in those states, it's very, very particular conditions. In the other 46 states, it's not legal. And yet, as Stephen educated me and as you talked about here, it's very, very rare to see a prosecution like the prosecution of Barbara Mancini.
BRUNIAnd that's because, no matter what the law says, there is a sort of understanding in our society that this is a very private thing. It's a very intimate thing and that we really kind of want to respect that even if we don't want to enshrine it in law. I wrote about this because I think this is one of those examples of a very unusual prosecution that sends a really chilling message to people, that you don't have agency -- the state does. And I want people to talk about it, and I want people to question it.
MACINTYRERight. So, you know, 78 million Americans are turning 65 in 2011. And if you just connect this to what Joanne said, which is that a majority of elder care, a majority of health care towards the end of life and -- is going to be happening in homes because the system is going to have to accommodate for us to be taking care of our loved ones in our homes. And do we have the systems and the public policy in place to allow the largest number of options for people in that situation to practice good end-of-life care?
REHMIs there any...
REHMSure. Go ahead, Stephen.
DRAKEI just wanted to -- I keep hearing this end-of-life term. And one of the things that frustrates me is that term has become so flexible and used in so many contexts, it really serves to obscure good, honest, clarifying conversation than it does to facilitate it.
DRAKEYou know, as an example, in this very state of Pennsylvania, you know, under the heading of end of life, we've actually had disability advocacy organizations have to re-litigate something we thought we put to bed decades ago, which was to go to the -- and so Pennsylvania Supreme Court -- and this goes, too, to, you know, just because you don't have laws, medicine and even parents and guardians and family do need some monitoring.
DRAKEThat's why we have child abuse laws. We've had to go to -- we had to go to the Supreme Court in Pennsylvania because there were cases of people with developmental disabilities going into the hospital with treatable conditions but needing temporary life-sustaining treatment, such as a ventilator, with an expectation of a full recovery.
DRAKEBut their guardians and the doctors wanted to withhold that even though what they're returning to as their previous state. They became an end-of-life condition. And, you know, we thought we put this to bed decades ago, but we're seeing a resurgent of that. There are five states where this has to be fought out, and that's all under the heading of end-of-life.
LYNNThere's a way in which all of this language becomes very seductive. You know, we all want many options. Actually, what we really want is the option we most want. I don't care if there are 25 options. I care that the one I most want be available. And this category of terminally ill is, in fact, or end-of-life is, in fact, terribly difficult to find.
LYNNThere must have been a time when it made sense when people kind of got terribly ill and died within a few days or maybe a couple of weeks. But now, most of us die by bits and pieces, and we have long-term disability for a long time. And when do we pass from being merely mortal to being terminally ill is unclear.
REHMExactly. Is there...
LYNNSo we need this dialogue.
REHMIs there any state which state which allows assisted suicide without a doctor present?
LYNNNo. There's no state that allows that, and there's no state that has proposed it.
MACINTYREI think it's also important to note, however, that, you know, states like Oregon and Washington, I think what Stephen is saying right. We have to be vigilant in the application of all options, you know, so I don't -- in ensuring of their safety, being sure that they are the patient's choice or the family and patient's choice. And, you know, if you look at Oregon and Washington, both of those states have assisted suicide statutes and Death with Dignity Acts, and they coexist. And institutions and providers are able to negotiate those as our families, doctors and clients.
REHMAll right. Here's an email from Richard in D.C., who says, "Given that dementia and Alzheimer's are the problems engulfing more and more folks and families, I keep hoping the circumstances of declining cognitive faculties not yet terminal can addressed by persons with wishes, plans, directives to end their lives as the competence to decide before they are out of that capability and competence to sign or express wishes as the dementia worsens. Please have Dr. Lynn and Mickey address those."
LYNNDementia is obviously our big crux, is a very difficult issue. No statute here or elsewhere allows for someone else to take your life while demented. No statute allows you to take your life two or three years ahead of dying naturally and insist instead the public officials intervene. I think there'll be a lot of debate over how we should handle that.
LYNNIt is the case that most people, not everybody, but most people who have serious dementing illness have other illnesses. And in the care of people who are good hospice doctors and palliative care teams, the first thing that comes along that's fatal is allowed to transpire rather than dragging it out, you know, for another decade. But that isn't the standard practice, and it's risky. We risk being prosecuted for those sorts of courses.
LYNNSo it's something that needs a lot more discussion, and we need to figure out what we're going to do.
MACINTYREFirst up, I hope that medical advances help and the research helps to try and, you know, cure some of these illnesses and take away the need to have to have this kind of public policy solution, number one. Number two, there is advanced planning that you can do around this. Compassion & Choices on our website offers a dementia provision for your health care directive that you can access and use. It's there, as well as a petition to the AG in Pennsylvania, if you'd like to speak out on the Mancini case itself.
REHMAnd, Frank Bruni, do you want to comment on that Alzheimer's the growing problem of dementia and trying to make sure that one does go with dignity?
BRUNIYeah. Well, I mean, I think the situations of dementia, Alzheimer's, I mean, there are some very murky things that can happen here and some zones we can get into that are very difficult. And I think we can never usurp. We always have to think, what do we really know about the person's own desires? And we always have to defer to that. But here, we're talking about -- the reason we all got on the phones is we're talking about a situation that I don't think is ambiguous at all.
BRUNIWhat's interesting about the Pennsylvania prosecution that set our conversation in motion is no one is coming forward to contest that the 93-year-old man didn't want to die. No one's coming forward to contest that he was in the last month of his life, if not the last week. Nobody is coming forward to contest that he was in pain.
BRUNIAnd I think what we need to look at in this case is prosecutors around this country have a lot of discretion, what they spend public money and what they spend public resources on when they don't. And I think we are owed some answers from the Pennsylvania attorney general's office as to why public money and public time is being spent on the Barbara Mancini case.
REHMStephen Drake, would you agree?
DRAKEAbsolutely on this one. Traditionally, and I'm not just talking about before the advent of assisted suicide laws, this is how things were handled. The cases that get try -- that got tried usually were ones where there were indications of coercion or financial interest. The ones that made it to trial and weren't handled quietly had elements that were outside of what you see in this case.
DRAKEI can, you know, and, you know, this one, you know, putting this one up and, you know, I'll be honest, you know, gives everybody the idea that, you know, yeah, there's a need for assisted suicide laws because, you know, people really do have to be afraid of, you know, cops coming into your home, and, in fact, you know, people weren't doing that. It wasn't happening.
REHMAnd you're listening to "The Diane Rehm Show." By the way, the Pennsylvania attorney general is Kathleen...
REHM…Kane. All right. Let's go now, open the phones. We'll go to Cleveland, Ohio. Laura, go right ahead. You're on the air.
LAURAThank you very much. I'm calling just to share our story, our family story. I have no kind of prescription on what the law ought to do. But what I do know is what happened in our family. Our mother was 62 years old, sick, very, very sick with pancreatic cancer, was in hospice, dying at home slowly, as you said, in any number of ways. I spent the -- my -- her last night with her. I went home and came back to my brother, sister and brother-in-law, and my sister and brother-in-law were a doctor and a nurse doing everything they could to help her breathe better.
LAURAShe was gasping for air. It was -- she was feverish. It was clearly, clearly the very last moment. She was in horrible pain the night before. There was not an ounce of quality to her life, and the pain and emotion she was going through as she was trying to breathe will never leave my memory. And my brother-in-law was doing every kind of trick he knew how to help her be comfortable breathing, and nothing was working.
LAURAAnd my younger brother took me to our refrigerator and said, see this little vial of morphine? It could end it for her. She would be not struggling this badly. But before we had a chance to even debate it, she passed away. And going back now, I don't think it would have been the wrong decision if we had used that vial of morphine to overdose her at that moment.
REHMLaura, I'm so sorry about the loss of your mother and what she went through. Joanne.
LYNNI, too, am sorry for what she went through and wish she had much better support. It is important, though, to correct some of the misunderstandings that you and your brothers and sisters had. There's no reason why your mother could not have had enough morphine to suppress her struggle to breathe, to induce a coma. She could have had that at home.
LYNNIt should have been offered. And giving her additional morphine at that point was not an overdose that would have caused her death. It would have caused her to breathe more comfortably. Almost certainly, it would be very hard to give her enough morphine or that you had enough in the house to cause an overdose.
MACINTYRESo I'm -- Laura, I'm sorry for this experience that you had. It's just tragic, and unfortunately I hear it -- I travel the country, and I hear it every single day. And the reality is, is that baby boomers are seeing death through their parents' eyes, and they don't -- you know, they're not happy with what they're seeing. And the vision is clear that without adequate support, without systems changing in a major way -- public policy, health care providers, everything -- it is going to be difficult for us to address the baby boom generation going through death.
REHMGive me one policy that must change.
MACINTYREI think one that we've been speaking about right here, one is the changes in assisted suicide statute so that they recognize the difference between what Stephen is talking about and what I might be talking about for terminally ill, mentally competent adults.
MACINTYREYou know, the clarification of that position, having a patient consultation act that actually empowers Medicaid and Medicare providers to be able to have real conversations that are reimbursed, you know, around end-of-life choices, and the options that can have that conversation and that vigilance that exist in, you know, a law in New York state and in California could be brought forward federally, which is trying to be happening right now.
REHMMickey MacIntyre, he's chief program officer at Compassion & Choices. Short break here. When we come back, more of your calls, your email. I look forward to speaking with you.
REHMAnd welcome back. We'll go right back to the phones to Alexandria, Va. Debra, you're on the air.
DEBRAGood morning. Thank you for taking my call.
DEBRAThis is deja vu for me. I actually was a power of attorney and had advance directives written out for my mother. First, to do those documents, you can't have any documentation of dementia or any mental competency issues. You can't -- you just can't write them after you had that diagnosis. So we had those in place, thinking my mother was having dementia. Actually, she had liver disease, and it was a confusion of mental status due to the liver disease.
DEBRAI took her to the liver center in -- at Pittsburgh, and she had a wonderful doctor. But it was clear she wasn't going to live. And there are certain requirements to get a diagnosis, to be admitted to hospice and usually an expectation of living less than six months. And most people are admitted to hospice six days before they die, so they miss that care. My mother, unfortunately, spent 18 months in hospice, which is a long, hard death.
DEBRAAnd twice she was admitted to the hospital, once to a trauma floor when she didn't want care, and another time, after a severe fall in the emergency room, the doctor wanted to transfuse her and further extend her life. And what I heard from the doctors themselves -- because I was in neuroscience, what I heard from the doctors themselves, great sympathy.
DEBRAThey had been through the same situation that I have. But unless you had this form by this hospital, they didn't recognize advance directives that were notarized and in place with hospice. And they would not honor her wishes. They kept medicating and extending her life. So this needs, you know, this -- don't confuse this with the euthanasia or assisted suicide because this is a real issue in and of itself.
REHMWhat can we do to ensure that the conversation begins on steps that must be taken, Joanne, to correct this kind of situation?
LYNNWell, for far too long, we've been complicit in allowing this to continue. Everybody I know has some awful story. Why don't we raise holy hell? Why don't we go to the CEO at the hospital? Why don't we -- you know, insist upon talking to the ethics committee, go to the Pittsburgh paper, you know, just really make it awful.
LYNNNow, I hate to burden families with that, but, you know, a year later, after they've recovered some and they're still angry and still hurting, let's raise these issues. There's nothing in the way of doing it right. The doctors in the hospital didn't have to transfuse, or they didn't have to admit her. They didn't have to do any of those things.
REHMWhat could she have done?
LYNNWell, what could she have done at the time may be fairly difficult.
LYNNI mean, she could have threatened to sue. She could have insisted upon the Quality Improvement Organization getting involved. She could have, you know, tried to escalate the issue. Very often, you're kind of caught in the maelstrom and in the moment. You have very little you can do. But later on, you can make it better for other people by pointing out just how crazy this is.
MACINTYREWell, you know, I mean, what she could have in the moment is actually transfer, you know, move to a different facility if that's at all possible, depending upon the location.
REHMWould they have allowed her?
MACINTYRESure. I mean, you should have the ability to do that depending upon, you know, all of us has to do with what the insurance coverage you have, how much money you have and things like that around the inequities of healthcare in this country. But, you know, that's one thing that can happen. The second is being a strong advocate and not necessarily just having you as a family member be that advocate, but advocating in that situation and then more broadly publicizing and advocating outside of that situation.
MACINTYREBefore all of that happens, though -- and this is, you know, one of the themes of this is, you know, Compassion & Choices has a little campaign going in November, talk turkey over turkey, which is to try and have these family conversations before you even get into this situation.
MACINTYREAnd this doesn't mean interrogate grandma or grandpa or interrogate your mother or father, but have family discussions. Start with, you know, I'm 50 years old. I got my family to talk about it because I am a scuba diver and a motorcycle driver. And I said, look, I want you guys to know what I want in this situation. What do you want? That's a different thing than interrogation.
REHMFrank Bruni, what steps do you believe need to be taken to advance this conversation?
BRUNIWell, you know, I'd like to answer that by talking not about a step but a kind of conversational thinking. I think there's a larger truth that hovers over everything we've been talking about, which is that we are not particularly good at the business of dying in this country. You know, I have a lot of physician friends who talk about the way families often behave around patients who are in a horrible accident, who are terminally ill.
BRUNIAnd there is this notion that death is a defeat, that death is a surrender, and that we in this culture of know-how and scientific advancement and all this stuff, we must fight to the last bit, and we must use every resources, bring them all to bear. And the truth of the matter is sometimes life is over. And the course of wisdom and the course of maturity and the course of dignity is not to fight against that in any way possible to the last moment but to die with dignity. And I wish we have that conversation in a bigger way.
REHMStephen Drake, what are your thoughts?
DRAKEWell, in the general context, you know, I get different calls than these people get. And, you know, when people with significant disabilities enter the health care system, they all too often run into people who -- medical professionals who are all too ready to make value judgments not based on their lives are over but communicating that their lives should be over or should have been over quite a while ago, you know, again, based on a quality of life assessment that the doctor wouldn't want to live that way.
DRAKEIt gets communicated in a variety of ways. And, you know, I'm not, you know, we handle that in various ways. The medical profession is notoriously resistant to educational efforts in a large scale. We work at it as we will. One thing I wanted to throw out in terms of the caller's issue about, you know, the hospitals that will take people, you know, who don't want medical treatment because they're terminally ill, this happens with nursing home, is, you know, sometimes it's wise to follow the money.
DRAKEA couple of years ago, I got a call from a reporter who was following that this was happening consistently with the nursing home in one hospital. And I asked one vital question. It turns out the nursing home and the hospital were owned by the same company. And so there was a financial interest on the part of the hospital in terms of how that worked. And, of course...
REHMThat's very interesting.
DRAKE...when the nursing -- when they came back to the nursing home because they had been hospitalized for a certain period of time, they were reimbursed to the higher rate.
REHMI see. All right. Frank Bruni, here is an email from Robert, who asks, "Who called the police after the daughter allegedly supplied her father with morphine?" That seems like an...
BRUNIThat's a great question. Yeah, it was the home hospice worker. The home hospice worker, as I understand it, had called the house that day and not gotten an answer. Had then dropped by and had found Joseph Yourshaw, the 93-year-old man, unresponsive, had a conversation with his daughter who was there, and then she called 911.
BRUNIAnd I think one of the -- if this prosecution continues, I think one of the big questions that's unanswered for a lot of people that will get answered is, why did she do that? Is there some history of disagreement between her and daughter over the 93-year-old man's care? Did she feel that she had a legal obligation and had legal exposure if she stood there and watched him die, even though he might not have died right then? So these are some of the questions that will be answered, I think, when the court proceedings continue, but we don't have answers to now.
REHMFrank, I know you have to leave us very shortly. I want to take one further call and then let you go. Craig in Camp Hill, Pa., you're on the air.
CRAIGYeah, good morning. Thanks for taking my call.
CRAIGThis is a situation that is unfolding literally as we speak. Quick background, my mother is 90 years old, has some dementia, barely lives on her own. In fact, we just decided two weeks ago to move her, and she finally agreed. So people -- family chain calls every day. It was Sunday morning. She wasn't responding to calls. I drove there two hours away. I'm the closest. I found her unconscious in the bathroom.
CRAIGObviously, what was needed to be done, which was call an ambulance, and she's now in a hospital doing marginally better. My question really comes around, again, my mom's in very diminished capacity. Her biggest fear is going to a nursing home. She doesn't want to live. She's ready to go. What would happen if I would have sat there on the bathroom floor with her for a matter of hours or a day and she passed away? The doctor said she was literally near death, and I looked at that as the opportunity for her to go.
REHMWhat you mean...
CRAIGWill I be brought up on charges if I just allowed her to continue -- just to sit with her while she died?
BRUNIYou know, I'm not a lawyer. I don't know the answer to that. It's a great question. Maybe somebody else on the -- one of your guests can.
LYNNYeah, the -- what happens with an out-of-hospital death is that there's always an inquiry. There's a coroner's inquiry, and usually a homicide or a detective comes and asks some questions. It would depend on how you came across to them as to whether there was anything that they would follow up on. Most of the time, of course, they say, "Well, you know, this was a person found unconscious on their floor, died in their son's arms." You know, so it goes. There's no sign of trauma. There's no sign of being malicious. So you'll be fine, but there's always a risk.
REHMOf course. And, Frank Bruni, I want to thank you for your very powerful column and for being with us this morning. I hope we can talk again.
BRUNISure. Thank you very much.
REHMFrank Bruni of The New York Times. His column appeared on Sunday. It was titled "Fatal Mercies." And here's something from NPR. While the U.S. Supreme Court in 2009 declined to recognize a constitutional right to assistance in dying, it did say that a patient has a right to as much medication as they need even if it hastens the time of death." Mickey.
MACINTYRERight. And, you know, I think that this is like an important facet to recognize that this is part of the discussion and the conversation. And I think it's going to take another Supreme Court case to make some determination around the first part of that, which is from a case of Glucksberg and Quill, two cases that happens simultaneously.
MACINTYREAnd it'll be interesting to see how this conversation continues to unfold in the legal and policy debate. You know, clearly, she should not be charged with that based on what, you know, being charged with assisted suicide based on what the Supreme Court has said about the medication and the pain treatment that she should have been able to be providing to her father.
LYNNThere are so many opportunities to make this better. Right now, in our massive payment to medical care systems to build electronic records, the entire record on advance directives is yes or no. Not what it says, but, yes, they have one or no. That is crazy. There ought to be the actual advance directive. Not only that, there ought to be the overall care plan and the patient and family's goals. There's no place in the electronic record yet for a care plan.
LYNNYou know, the infrastructure that we need is not only the conversations, but the way to really insist that the care system noticed what we're saying and take account of it. Sen. Warner has -- and Isakson, I guess, have recently introduced a bill in the Senate that's really pretty good that pays for the conversation with the doctor, does demonstration programs to make sure that these plans are in place, would really move us forward. Let's get behind some of those sorts of things.
REHMAnd you're listening to "The Diane Rehm Show." Let's go to Charlotte, N.C. Kim, you're on the air.
KIMHi. Obviously, this is a heated subject. A lot of people feel very strongly. But one of the arguments that I've always had with it is, you know, in our society, we think it's inhumane to allow an animal to continue to live when it's clearly suffering or near its end of its natural life. And yet, for human beings, we -- well, I shouldn't say we, but some people believe that it's just the opposite, that if we were to end our life when it was going to end soon anyway in a humane manner, that that in itself is inhumane. It's just a huge conflict. I...
REHMStephen Drake, help me to understand exactly what your...
DRAKEI'd be happy to.
REHM...organization is opposed to.
DRAKEWell, I'd be happy -- I'd like to take that example specifically.
DRAKEWe have a comfortable myth about our relationship with our pets and how and why we put them to death when we do. The myth out there is that all of us have -- treat our pets as family members. And when we have them put to death, it's because they have painful terminal illnesses, and they're close to death.
DRAKEIn fact, that's a minority of the pets who end up getting put down. Most of them, it's because they're urinating on the rug, or they have behavior changes. They have a condition that's too expensive to treat or other issues that have more to do with the needs of the owner than the needs of the animal.
DRAKEUnfortunately, we're not very -- we don't -- we're not comfortable with being honest about those reasons, about why we put these animals that we called family members down. So this myth prevails. And I think if we're going to talk about what we do with our pets as a basis for saying what we should with do humans, then we should use the full context. We need to be honest about how and why we kill animals if we're going to use that as an argument for what we should do with humans.
LYNNWell, but it's much -- even much more fundamentally, it is simply different to be a human and it is different to play a part in the ending of someone's life who appears to be a human and is, you know, and at least in many people's eyes, built in God's image. You know, we don't eat humans. We eat animals. You know, it's just a very different relationship.
LYNNBut -- so I don't think that helps. But I do think it helps to point out that we simply cannot tolerate a forcible inhumanity and that, you know, the kind of inhumanity that some of the callers have said are, you know, really should be banished. We should not be allowing people to be in such terrible suffering.
LYNNWe know how to do it.
REHMAnd finally, Mickey MacIntyre, would you read for us quickly the last paragraph of Frank Bruni's column, in which he talks about a case that worked.
MACINTYRE"I couldn't ask anyone how, precisely, Mancini had done her father wrong. I couldn't point out that his widow, her mother, had spoken out in defense of her before everyone involved stopped talking. I couldn't note the difference -- the different exit made recently by a terminally ill journalist in Seattle, thanks to Washington's Death With Dignity Act. Her name is Jane Lotter. And last week, in The Times, Michael Winerip wrote this of her last moments with her family, including her husband, Bob Marts.
MACINTYRE"On July 18, the couple and their two children gathered in the parents' bedroom. Mrs. -- Ms. Lotter asked to keep in her contact lenses in case a hummingbird came to the feeder Mr. Marts had hung outside their window. The last song she heard before pouring powdered barbiturates, provided by hospice officials, into a glass of grape juice was George Gershwin's 'Lullaby.' Then she hugged and kissed them all goodbye, swallowed the drink and, within minutes, lapsed into a coma and died. No paramedics."
REHMMickey MacIntyre, Dr. Joanne Lynn, Stephen Drake, Frank Bruni, thank you all.
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