Nearly a quarter of Medicare’s $550 billion annual budget pays for medical treatment in the last year of life. And almost a third of Medicare patients have surgery in their last month of life. But when people are fully informed about the risks of many life-prolonging procedures, they often decide against them. That’s what happened to a woman in Connecticut. After the devastating experiences her husband went through following a stroke, she refused major heart surgery for herself. In a new book, the couple’s daughter — a journalist — tells their story and offers advice for us all.

Guests

  • Katy Butler journalist whose articles have appeared in The New Yorker, The Best American Science Writing, The Best American Essays and The Best Buddhist Writing.

Read An Excerpt

Excerpted from KNOCKING ON HEAVEN’S DOOR: The Path to a Better Way of Death by Katy Butler. Copyright © 2013 by Katherine Anne Butler. Excerpted with permission by Scribner, a Division of Simon & Schuster, Inc.

Transcript

  • 11:06:54

    MS. DIANE REHMThanks for joining us. I'm Diane Rehm. About 24 million Americans are helping to care for aging parents. In a new memoir, a journalist tells the story of her own parents. Her father's difficult final years led her mother to defy the doctors who had urged her to have major heart surgery. In deciding against risky but potentially life-prolonging care, her mother faced the end of life on her own terms. Her book is titled "Knocking at Heaven's Door: The Path to a Better Way of Death."

  • 11:07:34

    MS. DIANE REHMAuthor Katy Butler joins me from the studios of KQED in San Francisco. You're invited to be part of the program. Give us a call, 800-433-8850. Send us your email to drshow@wamu.org, follow us on Facebook, or send us a tweet. Welcome Katy, good to have you with us.

  • 11:08:01

    MS. KATY BUTLERThank you very much, Diane. I'm really pleased to be with you.

  • 11:08:05

    REHMThank you. Katy Butler, your father at 79 was quite vigorous, quite healthy, a good lifestyle, and then what happened?

  • 11:08:20

    BUTLERHe had a devastating stroke at the age of 79. He could no longer fasten a belt or finish a sentence, and this was terribly hard on a very argumentative and active retired college professor.

  • 11:08:34

    REHMSo what happened next?

  • 11:08:39

    BUTLERHe struggled mightily to recover from this stroke, however, my mother really became a full-time caregiver and it was absolutely exhausting for her. She was 77. And a year after the stroke, my poor father was given a pacemaker in a very, very rush decision that was really not discussed with the family, and unfortunately, that kept him going into a period of time when life really became a curse rather than a blessing to him.

  • 11:09:13

    REHMI'm interested that you say a rush decision without discussion with the family. What happened?

  • 11:09:23

    BUTLERIt was one of those little things that looked like a no-brainer...

  • 11:09:27

    REHMYeah.

  • 11:09:28

    BUTLER...but turned out to be a really big brainer.

  • 11:09:30

    REHMHmm.

  • 11:09:30

    BUTLEREssentially, he developed a hernia. He needed hernia surgery. It was going to be done by general anesthetic, which is risky. He needed a cardiac clearance in order to get this surgery.

  • 11:09:45

    REHMRight.

  • 11:09:45

    BUTLERThe cardiologist did some tests, said you have a slow heart beat, we need to give you a pacemaker just in case, really, to make sure you get through this surgery. Now, I found out much, much later when I was doing research for the book, that we could have done the surgery a different way. We could have discussed the implications of putting this life-prolonging device with a 10-year battery into my poor old dad, and we could even have just simply been told, look, this device can be painlessly turned off without an additional surgery, if later in life it becomes the merciful and appropriate thing to do.

  • 11:10:28

    BUTLERBut we had none of this information. So something that looked like a minor surgery and a no-brainer, turned out to have major long-term implications for him, for my mother, for me, for everyone in the family.

  • 11:10:43

    REHMAnd that pacemaker, did it actually improve the quality of his life for a time?

  • 11:10:54

    BUTLERNo. It made no difference to the quality of his life unfortunately.

  • 11:10:57

    REHMReally.

  • 11:10:59

    BUTLERBecause he was doing fine. He'd had no physical symptoms related to the slow heartbeat. This was just a just-in-case surgery to get him through this hernia surgery.

  • 11:11:10

    REHMAnd the doctor, in telling your father and I presume your mother, about this pacemaker said, if you're going to have the hernia surgery, you must have a pacemaker, no ifs, ands, buts about it.

  • 11:11:32

    BUTLERIt wasn't presented as an option. It wasn't presented in terms of the pros, cons, and alternatives to this treatment. It was pretty much just -- it was, as I said, it was a no-brainer. To him -- to these cardiologists it really was a no-brainer. And I think it was a challenge to him to even understand that we might later think this was a mistake.

  • 11:11:59

    REHMKaty, in writing "Knocking on Heaven's Door: The Path to a Better Way of Death," I mean, so many people in this world are focusing on a better way to live, and yet, you are writing about a better way toward death. And I've already had one email saying, "Katy Butler's story in the June 2010 New York Times article, was hugely transformative for our family, and extremely helpful as we faced my mother's declining health the best we could." The question for Katy, how do we start that conversation?

  • 11:12:57

    BUTLERI think we need to start these conversations years earlier than we are, and we need to regard them as emotional and spiritual conversations, not conversations just about, I don't want to be plugged into machines, or I don't want a pacemaker. We're reducing our language to such a narrow, medical, technical, legal situation, and that I think is the part of the reason nobody broaches this conversations. I think elderly people, older people need to have conversations with their kids where they say, this is what makes my life worth living for me, and these are the kind of conditions in which I'd just as soon be dead.

  • 11:13:38

    REHMSo you're suggesting that it is the elderly people who begin the conversation, not wait for the younger people who may be scared to death to broach it.

  • 11:13:53

    BUTLERI think it's scary for the younger generation because they don't want to sound as though they're trying to hustle their family -- the older person off the stage.

  • 11:14:01

    REHMExactly.

  • 11:14:02

    BUTLERHey, I have a friend who's 86. She sometimes says to her daughter, I only have another five years or so, and the daughter will say, oh, mom, you're so healthy. Let's not be morbid. Let's not talk about this now. The discomfort can come on either end.

  • 11:14:18

    REHMRight.

  • 11:14:19

    BUTLERSometimes the kids want to talk about it and the parent says you'll know what to do when the time comes. Well, people don't necessarily know.

  • 11:14:26

    REHMTell me what kind of burden your mother felt once your father suffered the stroke, had the pacemaker inserted, and everything else that went on.

  • 11:14:42

    BUTLERMy mother was an uber housewife of extraordinary energy and competence. After my father's stroke, she became first an hour-by-hour caregiver, and then a moment-by-moment caregiver as he descended into dementia.

  • 11:15:00

    REHMShe had been a gardener, a cook, doing all kinds of things, an artist as well.

  • 11:15:10

    BUTLERAnd all of this, and a sewer, and a knitter. I -- the symbol that I remember is that she was halfway through knitting a really beautiful ribbon top out of chenille, and that top stayed in her sewing basket for the six-and-a-half years unfinished.

  • 11:15:26

    REHMWow. Wow.

  • 11:15:28

    BUTLERShe couldn't go out to lunch with friends, she could only do yoga home, she couldn't go to a class. It was a devastating change. She lost 15 pounds and she was not fat to begin with. She ended up on antidepressants and sleep medications that then had side effects that -- it was amazingly difficult for her, and she's somebody that I worshipped in terms of her competence in these practical areas. So I only imagine what is like for other women who are not as focused and skilled as she was.

  • 11:16:04

    REHMWell, and here's where you point out the physical strength that she had to have to help your father. Not only the buttoning of buttons or the snapping of the belts, but to practically bear his load from room to room to room.

  • 11:16:30

    BUTLERAnd toward the end there was a point where she was helping him downstairs, holding him up by his belt, when he slipped and fell and fell on top of her so that they went all the way down the stairs and she was black and blue from hip to toe.

  • 11:16:44

    REHMOh, Katy.

  • 11:16:44

    BUTLERAnd he broke -- and this -- yeah. It was horrible to watch and witness, and I did everything I could, but I was on the opposite coast. I talk about being part of the roller board generation because we're flying back and forth across country all the time. Every time there's a crisis, trying to hire home health aides, all kinds of things, and also maintain earning a living and having relationships with our own families.

  • 11:17:18

    BUTLERIt's really a struggle, and I wish doctors would think about this and think about the fact that when they're treating a very elderly person and prolonging a highly disabled life that they're also putting tremendous stress on other people in the family.

  • 11:17:32

    REHMWell, and here's where you say that the medical system is rigged to cure rather than care.

  • 11:17:43

    BUTLERIt was so sad to watch. Medicare paid $10,000 for my father to get a pacemaker with no -- in the blink of an eye, no questioning. But when my father needed speech therapy which actually helped him and truly added to the quality of his life, he was trying to write his own autobiography with his very stroke-damaged brain, but it was great for him, and that was limited to $1500 a year, and he had to show he was improving or they would stop it all together.

  • 11:18:10

    BUTLERHe couldn't just be using it to maintain his level of functioning. And family doctor really didn't this pacemaker was a good idea, but he would only have been paid $54 to have a discussion about whether the pacemaker was good.

  • 11:18:26

    REHMKaty Butler, her new book is titled "Knocking on Heaven's Door: The Path to a Better Way of Death." We'll take a short break here. When we come back, more of your emails, your calls. I look forward to speaking with you.

  • 11:20:01

    REHMAnd welcome back. If you've just joined us, we're talking about a conversation that perhaps each of us, no matter how old we are, needs to have with those closest to us, a conversation about what we want, what we would need, what we ask for. Katy Butler has written extensively about this whole issue. Her new book, really arising out of her father's death and then her mother's refusal for care in that same way, is titled "Knocking on Heaven's Door: The Path to a Better Way of Death."

  • 11:20:59

    REHMI see that our lines are filled. We're going to open the phones in just a moment. But, Katy, first take us back to the day your mother asked for help getting your father's pacemaker turned off. First, what were the consequences of turning that pacemaker off had been?

  • 11:21:27

    BUTLERIf we had turned off the pacemaker, which could have been done with a little radio-controlled device, the likelihood is that my father would have continued to slowly fail. But his failing would have been a little more rapid than it turned out to be. He could have died within five days. He could have died within three to six months. There's really no way to predict exactly what effects it would have had. But it would have removed the barrier to the easiest, most merciful natural death.

  • 11:22:01

    REHMAnd clearly your mother was not only at her wit's end. She felt as though she was in the process of dying as she was taking care of your father.

  • 11:22:17

    BUTLERShe literally said, he is killing me, he is ruining my life. And this was at a point where he did things like brush his teeth over and over again for an entire weekend, and she couldn't stop him or get him to stop. He was suffering. She was suffering. I was even suffering.

  • 11:22:37

    REHMAnd -- but I...

  • 11:22:38

    BUTLERI remember that moment when she asked me as, like, one of the worst moments of my life. I felt horrible. I felt as though I had no choice but to help her and that it was the right thing. But at the same time, I felt almost like I was killing my father. And I think these difficult moral medical decisions are widespread, and we're not discussing it enough.

  • 11:23:01

    BUTLERFamily members are having to decide over and over again to not to put in feeding tubes, to say no to respirators, to say no to dialysis. These are a new kind of moral dilemma that has never existed in the history of the world before because people used to die too soon. They never died too late, and we didn't have all of this life-saving life-prolonging machinery to cope with.

  • 11:23:25

    REHMSo did your mother then go to the doctor and say, how do we turn off his pacemaker? What did the doctor say?

  • 11:23:38

    BUTLERMy mother went to the cardiologist. He said basically that she would need a court order. She would need to prove that he was mentally incompetent, which he clearly was. And essentially he was obstructionary. Later, he said to me it would have been like putting a pillow over your father's head. And now I didn't know at the time that we actually have a legal and a moral right to request the withdrawal of any medical treatment.

  • 11:24:06

    BUTLERThe Supreme Court has said we are not required to submit to medical treatment we don't want. But I didn't know that then. The family doctor was in favor of turning off the pacemaker, but he didn't have the technological know-how. So we felt kind of stuck. I now know that if we'd gotten into a palliative care program or found a palliative care doctor, we would have found doctors who were in alignment with our values and with our sense of what compassion and mercy were. And we would have had a smoother ride of it.

  • 11:24:38

    REHMAnd how did your father finally die?

  • 11:24:44

    BUTLERWell, my mother rebelled shortly after this no from the cardiologist. She refused to take my father to this endless round of medical appointments that were worthless. And she took him off most of his medications. He eventually -- he was actually finally allowed into a palliative care program.

  • 11:25:05

    REHMHmm.

  • 11:25:05

    BUTLERAnd when he developed pneumonia, quite consciously, we made the decision not to use antibiotics. And he died on a hospice unit within the hospital, a wonderful place. But it was still a grueling five-day death. And again we asked to have the pacemaker turned off. He's now actively dying, and we couldn't get any kind of clearance to do it, even at that point.

  • 11:25:30

    REHMEven within that palliative care within the hospital?

  • 11:25:36

    BUTLERYes. I think it was kind of a slip-up. It was one of those bureaucratic miscommunications. It's not the way, I think, the hospice unit usually works. But they couldn't get someone to clear it, and it just never happened.

  • 11:25:48

    BUTLERSo from that point on, Katy, for your mother, did she have time to recuperate from her ordeal after your father died?

  • 11:26:06

    BUTLERWell, tragically, not really. She got a couple of months of feeling that relief of being finally a widow. I mean, she was very distressed and mourning my father.

  • 11:26:18

    REHMOf course.

  • 11:26:18

    BUTLERFinally, she could sort of openly mourn him. But it became clear that she had developed heart problems, which I thought were partly a result of all of these years in the stress of caregiving. And she had two leaky heart valves. And she was 84. And I took her to the best hospital in Boston. It was best for heart surgery for very, very old people. And she asked a lot of questions. And when she found out about the risk of stroke and dementia, she said no.

  • 11:26:50

    REHMAfter surgery, you mean?

  • 11:26:53

    BUTLERYes. There's huge risks of stroke and dementia with open-heart surgery. And if you're very old, and you already don't have the cognitive reserve of younger people, this risk becomes extremely important to consider because quality of life at this point is so much more important than quantity.

  • 11:27:09

    REHMAll right. So let me understand this. It was not that her heart was failing. It was that she had two leaky valves. So what they wanted to do was to repair those valves, and you're saying that after that kind of surgery, the risk of stroke or dementia are heightened. Are there statistics showing that?

  • 11:27:43

    BUTLERThere are statistics showing that 13 percent of the people who get the surgeries that were finally pushed on my mother, but she said no to, 13 percent die in the hospital. Another 40 percent get discharged to nursing homes. But, unfortunately -- OK. But, unfortunately, most of the research on the success of cardiac surgery only covers survival for one month after the surgery. There are very few studies that actually look at cognitive performance after open-heart surgery.

  • 11:28:18

    BUTLERAnd there -- I'm sorry. They're not at the tip of my tongue. But there are statistics. I think it's that half of people have some level of cognitive decline following open-heart surgery because you open up the chest all the way from...

  • 11:28:33

    REHMOf course.

  • 11:28:34

    BUTLERAnd then on top of it, when you have an older heart, it's full of calcification. It's like a little fine dust. And this dust gets dislodged with the -- when you clamp and unclamp the aorta. And so this fine dust goes through your bloodstream and goes to your brain. So it's risky. It's risky. It doesn't mean it's always a bad idea, but you need to understand the risks.

  • 11:28:59

    REHMAnd especially at her age, her doctors were furious, I gather, that she decided against this surgery.

  • 11:29:10

    BUTLERI don't know if they were furious, but they were totally puzzled. They couldn't understand it because she was so healthy in other ways. And I was actually pressured. She had a heart failure management nurse who called me and said, look, please talk to your mother. She could live to be 90. And I called her and said, are you sure? You could live to be 90. And she was 84 at this point. She said, I don't want to live to be 90. Your father was my best friend.

  • 11:29:40

    REHMAh.

  • 11:29:41

    BUTLERAnd I had to respect that. She'd lived a beautiful full life. And because she refused the surgery and she knew that the end of her life was truly approaching, she could say to me things like, I'm ready to die. I'm at peace with all my children. She told me who to give her sewing machine to. She was a very practical woman. I mean, those were the kind of things that were on her mind as she really truly approached her death. She cleaned out the basement. You know, she repaired a broken window. She said, I don't want to leave a mess for my kids.

  • 11:30:13

    REHMHmm.

  • 11:30:13

    BUTLERAnd I think this is what we're depriving ourselves of when we try to postpone, postpone, postpone our deaths and think that some form of medical miracle is going to work forever.

  • 11:30:26

    REHMKaty, how did your mom finally die?

  • 11:30:32

    BUTLERAt 84, she had a heart attack. She came back from that heart attack on hospice, on oxygen, for another month. And then she had another medical crisis, possibly a heart attack, possibly something else. I'm not quite sure what. But she was taken to this wonderful inpatient hospice unit within the hospital. She said she wanted to take off her silver earrings.

  • 11:31:01

    REHMHmm.

  • 11:31:02

    BUTLERAnd the hospice nurse said, you don't have to take your earrings off. This is a hospice unit. You can wear anything. And she said, I want to get rid of all the garbage, which I think was her way of saying, naked, we come into this world, and naked, we will return.

  • 11:31:17

    REHMIndeed.

  • 11:31:18

    BUTLERAnd the next morning, she asked my brother to call me and my other brother, who was still in California. And when he came back from that phone call, she was dead.

  • 11:31:28

    REHMOh, my. She went peacefully.

  • 11:31:32

    BUTLERShe went peacefully. She went on her terms. That doesn't mean she had a perfect death. I was very sorry I wasn't there when she died.

  • 11:31:40

    REHMYes.

  • 11:31:43

    BUTLERBut she died the way she wanted to die. There's a movie called "Little Big Man," and one of the characters says -- he goes off into battle, and he says, today is a good day to die. And I feel like my mother lived the entire last six months of her life that way, that she basically said every morning, today is a good day to die.

  • 11:32:04

    REHMSo...

  • 11:32:05

    BUTLERAnd because she was willing to face it, she could leave her family so much less traumatized than people are when they die in an ICU.

  • 11:32:16

    REHMKaty, I gather, for you, the message of this book is not only that we need to talk about these issues within the family and even more broadly, if necessary, but also that we're utilizing so much of medicine in those very last months of life, which may be, which indeed is burdening the medical system to such an extent as we cannot really imagine.

  • 11:33:02

    REHMAnd before you respond, I want to remind our listeners, you are listening to "The Diane Rehm Show." If we are presented with those options late in life, are you saying, say no? Or are you saying question? Or are you saying it all costs too much? What are you saying?

  • 11:33:38

    BUTLERA quarter of Medicare spending is spent on the last year of life. A third of people end up in intensive care in their last month of life. A fifth of people die in intensive care. Those deaths can cost $300,000. If all that money was making people happier and giving survivors a feeling of completion -- but that's not the case. The rates of post-traumatic stress, depression, anxiety in family members who experience an ICU death are very high.

  • 11:34:10

    BUTLERI think it'd be a very different argument if all this spending actually produced less suffering and misery. I think I'm saying that, over the age of 80, a lot of us are like Humpty Dumpty. We look fine from the outside, but it only takes one push.

  • 11:34:28

    REHMRight.

  • 11:34:28

    BUTLERIt's one broken hip, one bad general anesthesia...

  • 11:34:29

    REHMRight.

  • 11:34:32

    BUTLER...one traumatic general surgery to push us over the edge into dementia, into needing home care, into needing nursing home care. So I think around 80, you've got to be very careful about being blue-skied by a doctor who says that you're going to sail through a surgery. You need to look at the pros, the risks, the cons, the alternatives.

  • 11:34:57

    BUTLERYou know, I'm not kind of a gathering point for terrible anecdotes of people who had relatively well-functioning relatives who had one of these major surgeries after the age of 80 and came out with so much mental damage that they now needed round the clock care. So I'm saying, think of it in terms of slow medicine, like slow food. Ponder. Think it over. Don't be rushed into decisions.

  • 11:35:24

    REHMAnd who's doing the rushing? Is it that doctors have curing so much on the mind and that they're presenting these options without alternatives and without fully informing a patient as to what the negative outcomes might be, without concern about cost to the system or to the patient?

  • 11:36:04

    BUTLERI think they're trained very well for curing and fixing. And for so much of our lives, that's an incredible blessing. I mean, if you and I walk out of the studio today and are in a car crash, we are going to be very grateful for fast medicine and lots of testing and respirators and everything.

  • 11:36:21

    REHMOf course.

  • 11:36:24

    BUTLERBut they're not trained to have difficult conversations. Cardiologists get no training in how to have end-of-life conversations with patients. And most people ultimately die of a heart problem. So every cardiologist should also really be a palliative care or a hospice doctor in their training. I'm not sure that the doctors are the ones who ought to be thinking about the money. I think it's the health policy people, the people who set the Medicare reimbursements. Those are the ones that should be worrying about the money.

  • 11:36:55

    BUTLERBut the doctors need to understand there comes a point when people's goals shift. They're no longer interested in maximum longevity and maximum treatment. They're interested in the healing that needs to take place in families close to the end of life.

  • 11:37:11

    REHMKaty Butler, her new book is titled "Knocking on Heaven's Door: The Path to a Better Way of Death." In just a moment, we're going to open the phones. We'll be taking as many of your calls as we can, reading your email, your tweets, your postings. Stay with us.

  • 11:39:58

    REHMAnd welcome back. If you've just joined us, Katy Butler is with us. She has very personal experience with the death of both her father and her mother. She wrote about those experiences in the New York Times back in 2010. Now a book. It's titled "Knocking on Heaven's Door: The Path to a Better Way of Death." We have so many good emails and phone calls, Katy. The first though I think you should clarify. "Why was Katy's father not placed in a facility? How could you allow her mother -- your mother to suffer to that degree? My mother," she says, "is well cared for in a dementia care facility."

  • 11:41:10

    BUTLERI think it's always possible to second guess and especially to look at someone else's experience and say, I could've done it differently or I could've done it better. And part of my point for writing the book was that I think all of us adult caregivers give ourselves a hard time, feel guilty. And I want to say to all of us out there, we do our best with the situation that's in front of us. In my parents' case, my mother didn't want to give up her freedom and move to a shoebox in what she called a henhouse.

  • 11:41:40

    BUTLERWe did, in fact, go and check out various assisted living places, both in California where I lived and in Connecticut. And she just didn't want to lose her freedom or her autonomy. And she was willing. And on top of that, I think moving to a facility would've been a living death for my father. It would've been the stripping of everything that he was familiar with, that he was comfortable with and a stripping away of my mother as well.

  • 11:42:12

    BUTLERShe was willing to show her love and her sense of her vow when she vowed in sickness and in health. Yes, it nearly killed her and probably shortened what remained of her life, but I was there to be their support for the decisions they made. I wasn't there to take over and make their decisions for them.

  • 11:42:34

    REHMIndeed. And here is yet another email. "My parents have always said, just shoot us if we become senile or incontinent or a burden. That's easy for them to say. I'll try to pull the trigger when I get the order but will I be able to?"

  • 11:43:02

    BUTLERJust shoot me is not an end-of-life plan. If you simply make sure that no one artificially tries to prolong your life, the chances are good that you're going to avoid those scenarios where someone is saying, just take me out and shoot me. There are many very elderly people, including the demented, who stop eating. And we need to take their signal -- when they stop eating and drinking, take that as a signal for a very painless pathway to a natural death and simply allow it. If you avoid all of this inappropriate life-prolonging technology, you have at least a shot at an old fashioned meaningful death.

  • 11:43:52

    REHMAll right. Let's open the phones. First to Laura in Cleveland, Ohio. Hi there, Laura, you're on the air.

  • 11:44:02

    LAURAGood morning. What a pleasure and a thrill. Thank you so much for writing this book. I've been living this for the last ten years. My mom's 91 and my dad passed away six years ago and she's missed him terribly since. She's in fabulous health except that she's 91. And we have learned she has -- we have all the paperwork. She's got DNRs but we have learned that she must present a DNR every time 911 is called or she goes to the emergency room or anything like that. That makes no sense to me. If she has a stroke or she has a heart attack she does not want to be resuscitated. But if I'm not there with the DNR they're going to do it. Is this true or is this just Ohio or are they selling me a bill of goods?

  • 11:44:56

    BUTLERIt's a state-by-state problem. I really think we need an 811 system so that you could call a flying squad of palliative care and hospice nurses who could come, reassure the family, move the person back into bed, do what needs doing without going to the ER. But meanwhile you really have to look on your state's website to see the requirements. In Connecticut you can have an orange hospital bracelet that is the DNR. And there's also the MedicAlert Foundation has a DNR bracelet that is recognized in all the states.

  • 11:45:32

    BUTLERBut otherwise, EMTs come in. They're job is to resuscitate. Seconds count. They resuscitate first and they ask for the paperwork afterwards in almost everywhere. So thank you for bringing this point up. It's really one of the ones that I made in the book and I'm really glad to get a chance to say.

  • 11:45:50

    REHMAnd here is an email following on that. "My parents and I have had the conversation. They do have advanced directives. We thought we were prepared but the situation that faced us for my father did not fit the decisions he had made. Despite knowing what he wanted, my father ended up in the ICU with more done for him than was anticipated. The cascading events ended up in opposition to the advanced directive. But at the time a decision needed to be made, it seemed the effective and appropriate thing to do."

  • 11:46:43

    BUTLERYeah, all I can say is this happens to a lot of people. It's kind of a slippery slope situation where each decision is very incremental. And then suddenly you're like deep in the deep muddy and you don't know how to get out. The only thing I can think of that really helps is having those conversations with your kids where you say, I don't want to die but I'm ready to die. I'm okay with dying. I prefer dying to ever going to the ER. My mother's doctor -- my parents' doctor said to us, whatever you do don't call 911. Don't put him in the hospital.

  • 11:47:20

    REHMInteresting. Let's go now to LaGrange, Ky. Hi there, Sherry, you're on the air. Sherry, are you there? I'm afraid we've lost her. Let's go to Peter in Tyler, Texas. Are you there?

  • 11:47:41

    PETERYes, ma'am, I am. How are you?

  • 11:47:42

    REHMI'm fine, thank you sir. Go right ahead.

  • 11:47:46

    PETERThis is a great show. I'm an attorney in Tyler. I practice elder law and I bring folks into my office every day for conversations like this. And my wife is a neurologist so I see her -- the other side of the equation from the physicians who are confronted with these issues too. And there's three things that I try to do in my practice. When folks come in together, a husband and wife, and they're trying to figure out what to do, there's two very important documents that we talk about. One -- and every state has some version of this.

  • 11:48:20

    PETEROne is called an advanced health care directive, which is a living will and the other's a medical power of attorney. And I try -- and the advanced health care directive is where the people make their decisions in writing in this document as intended to be writing to their physician, not to anyone else. And I talk to them a lot about let's make some -- the end of life is a complex process -- it can be a complex process. And I experienced with my wife's mother who died of pneumonia in hospice care, was a beautiful way to go. And I take that experience also.

  • 11:49:03

    PETERSo my point is this. I talk to the people individually because if you bring the entire family in the room, everyone has an opinion. And the opinion of the daughter -- and the people will look to their kids and say, well what do you think I should do? Or they'll look to their husband or their wife and they'll say, what do you think I should do? And I found that in my practice more appropriate, if I can get them alone and then go into some detail about what's going to happen and then I'll bring the other folks in to educate them.

  • 11:49:35

    REHMRight. That's a good idea, don't you think?

  • 11:49:40

    PETERUm-hum. And so -- I'm sorry.

  • 11:49:42

    REHMKaty.

  • 11:49:43

    BUTLERI think this is tremendous and I want to present a couple of other things. One is documents called POLST which are Physician Orders for Life Sustaining Treatment which are on pink paper. They're signed by a doctor and so they're often given more weight in hospitals than are documents signed by you. I mean, that's a sad thing about the politics of a hospital, but that is the way it is.

  • 11:50:07

    BUTLERThe other is there's something called the Conversation Project which you can go online and find, which has tools for helping you have these conversations. And finally, there's a phrase in hospitals called the nephew from Peoria. The nephew from Peoria is the estranged family member who flies in at the last minute and insists that everything be done. Now that person may not hold -- probably doesn't hold the medical power of attorney. But the sad fact is that if there's not consensus in a family, hospitals will often do things that go against the directives and go against what the medical proxy wants because of this fear that the nephew from Peoria is going to sue.

  • 11:50:50

    BUTLERSo once you've got all your documents the way you want them, it's so important to involve even those difficult family members that you don't get along with. Because if they're not onboard before you die, you may have a problem.

  • 11:51:03

    REHMNow Colleen writes as a registered nurse she believes that this subject is not discussed in medical school. She says, "As nurses, we want to prevent suffering but I've been in situations," she says, "talking with a doctor on behalf of patient's family members who do not want to prolong their loved one's life. And the doctor is very reluctant to follow a family's wishes."

  • 11:51:42

    BUTLERI've gotten emails from intensive care nurses who talked about how traumatic it was for them to watch the suffering they felt they were inflicting on people who were dying. And some of these hospice nurses have -- I'm sorry, some of these ICU nurses have now become hospice nurses. I think it's a two-pronged problem because I also hear from doctors who say, these families come in and -- especially critical care doctors in the ICU -- and they say, we tell them that this is futile. And the family just can't say no and continues to charge ahead.

  • 11:52:18

    BUTLERSo we have a two-pronged problem. The doctors are not educated in how to have a conversation and some of them do push too much and can't give up. And the other is that we, as a society, are over unrealistic about how much we expect medicine to do at the end of life in terms of cures.

  • 11:52:37

    REHMKaty, in the discussion over Medicare, there was discussion about so-called death panels. What did you make of that?

  • 11:52:52

    BUTLERWell, it made me very sad to see something that is such a deep human need, which is to have a serious conversation with someone you trust about how you want this last chapter of your life to go, to have that distorted into death panels just really -- I thought it was tragic. I think you've got to remember the medical lobby is one of the three most powerful in Washington. And the major players are the medical device makers, the doctors who are interventional cardiologists who make half a million dollars a year.

  • 11:53:25

    BUTLERAnd for them, this fast-medicine, throw-everything-at-everybody approach is actually very profitable. And we have to factor that in to that death panel conversation.

  • 11:53:34

    REHMAnd you're listening to "The Diane Rehm Show." Let's take a call from Nina in Toledo, Ohio. Hi there, you're on the air.

  • 11:53:47

    NINAHello. Thanks for taking my call.

  • 11:53:48

    REHMCertainly.

  • 11:53:50

    NINAI just was listening to the conversation. It sounds like it was along the lines of what I was going to comment on. My husband is an ER physician. I'm also in the medical field as a practitioner. I'm a physician assistant. And I feel very strongly that medical professionals go into the field to help people. And sometimes helping people means helping them make a choice not to do something or to do less. And I was disturbed earlier in the conversation about the comment that physicians and other medical practitioners do things just for the monetary benefit.

  • 11:54:22

    NINAI think we'd much rather not get paid and not do something unnecessary and not see someone go through a disturbing procedure. But patients and especially family members are almost offended when that -- you know, that topic is brought up sometimes. Some people are very appreciative but sometimes telling people that certain things need to be lived with or certain things just shouldn't be done is what the physician wants to do, you know, more than the patient.

  • 11:54:52

    BUTLERI so totally agree with what you're saying. I think we have a multi-factorial problem here. But I don't think you can discount the fact that oncologists who advises a -- let's say third of fourth line chemo that is not going to do much...

  • 11:55:06

    REHMExactly.

  • 11:55:07

    BUTLER...will be paid 6 percent of the value of the chemo as a payment. But if he has a long conversation with the family about maybe this isn't a good idea, he'll basically be finally punished. I mean, do we really want a system that's set up so that it rewards financially behavior that's inappropriate and punishes doctors who really take time with patients and that is almost not reimbursable? Because we have a system that rewards procedures and tests and doesn't pay doctors adequately for time, thought, conversation, connection. And those things are crucial at the end of life.

  • 11:55:46

    REHMKaty, how, finally, has your own experience with your parents affected your thinking about yourself?

  • 11:56:00

    BUTLERWell, I say over and over again, some version of take me out to the field and shoot me, which I've made it very clear that if I have enough dementia that other people have to make my own medical decisions, I don't want any barriers erected to a natural death. And I've written a hand-written statement to this effect that's part of my medical directive. I've also chosen, as my medical decision maker -- not my long term partner Brian, who I adore because I don't want to put that burden on him -- I've chosen a very hard-headed woman friend who I know will have no difficulties standing up to a medical system if something gets out of control.

  • 11:56:43

    BUTLERThat's really the only thing I've done is really be clear with people that I realize a time is going to come when we have to renounce this world. We have to say, we've loved our lives and we're okay with them ending.

  • 11:56:59

    REHMKaty Butler. Her new book "Knocking on Heaven's Door: The Path to a Better Way of Death." Katy, I congratulate you on the book. I think you've done a great deal for all of us. Thank you.

  • 11:57:19

    BUTLERThank you very much, Diane.

  • 11:57:21

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

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