At age 76, Susan Faludi's father underwent sex reassignment surgery. When Stephen became Stefanie, the feminist writer sets out on a journey to better understand her father -- an exploration that becomes an inquiry into the meaning of identity.
Terence Bryan Foley was an American expert on agriculture and Asia who earned his Ph.D. when he was in his 60s. He played more than 15 musical instruments and spoke six languages. He was funny, eccentric and beloved by his wife, award-winning journalist and editor Amanda Bennett. In a memoir, Bennett writes of their marriage, their travels and their battle for more life together after Foley was diagnosed with cancer. She takes us on a journey through the complex and often maddening American medical system. And she questions whether the emotional, physical and monetary price was worth it.
- Amanda Bennett an executive editor at Bloomberg News; Pulitzer-Prize-winning reporter; former editor, Philadelphia Inquirer; and former managing editor, The Oregonian.
Family photos of Terence and Amanda. Photos courtesy Amanda Bennett. All rights reserved.
Read An Excerpt
Excerpt from “The Cost of Hope: A Memoir” by Amanda Bennett. Copyright 2012 by Amanda Bennett. Reprinted here by permission of Random House. All rights reserved.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Anyone who's gone through a terminal illness with a loved one knows it requires a great deal of emotional and physical stamina. Pulitzer-Prize winning journalist, Amanda Bennett, went down that road with her husband, Terrence, for seven years. They tried everything available to modern medicine to cure his cancer. The costs were high. He died despite all efforts in December 2007. With humor and grace, Bennett tells their story in a new memoir, and she asks was it worth it to them, was it worth it to society?
MS. DIANE REHMThe book is titled "The Cost of Hope." Amanda Bennett joins me in the studio. I know many of you will want to join us as well. Call us on 800-433-8850, send us your email to firstname.lastname@example.org, feel free to join us Facebook or send us a Tweet. Good morning, Amanda.
MS. AMANDA BENNETTGood morning, Diane.
REHMSo good to have you here.
BENNETTIt's wonderful to be here. Thank you.
REHMAmanda, you're late husband was really a remarkable man. Tell us about him.
BENNETTHe was a remarkable man. He was a renaissance man. He played 15 musical instruments, he spoke six languages. At the time of his death he was studying Arabic, which would have been his seventh. He was involved and interested in every single aspect of life.
REHMThe manner in which the two of you met and then subsequently got together was kind of quirky. Would you read to us, starting at page 16 and set that up for us?
BENNETTI'd like to set a little bit of a stage. This is in what was still known as Peking in 1983. This is a man I barely knew. I had met him once at a party in which he pretended to be someone else to engage me, and then later on I bump into him in the middle of the night on a night flight home, and he's persuaded me to come and watch a movie with him in the middle of the night in China. So I begin on page 16.
BENNETT"He pours out a dish of mixed nuts and one of cookies, both hand carried in from home. Treats, he says. We settle in to watch 'Tom Jones.' By the end of the movie, the sun is coming up. We have barely spoken. I try to make conversation, but it's plain that there is a right way and a wrong way to watch movies with Mr. Foley. Total silence and concentration is the right way. Any kind of distracting small talk is the wrong way.
BENNETTI stand to go. He walks over and stands facing me. Here it comes, I think. Then he reaches past me and pulls a map of China from one of the shelves. He's suddenly all business and talking rapidly. So here's what we're going to do. It isn't a question. There are 17 cities we're allowed to visit now, and over the next couple of years there will be more. If we start now, we can get to all of them by the time our tour is up. You're probably here for what, two, three years? If I need to, I can extend my tour. So can you I suppose if we need to.
BENNETTThere's Kunming, Chongqing, Chengdu, Wuhan. He begins rattling off the names of Chinese cities. We'll travel all over China together. We've got to start right away. We haven't got that much time. You are going to be somebody and you're going to need somebody to take care of you. We'll see everything we can in China. Then we'll get married in the Great Hall of the People. I think they're letting foreigners get married there now, but anyway, we can get married again back home, and then we'll have a raft of kids. We have to get moving.
BENNETTWho is this guy? What is he saying? Did he ask me to marry him? Oddly enough, it's his phrasing that strikes me first. A raft of kids? Who says raft. For that matter, who says treats? Who proposes to a woman he doesn't know who clearly is hostile to him after one evening watching movies together. This guy is out of his mind. I thank him for the movie and the drink and leave, intending that this meeting be our last. The next day I find myself climbing (word?) Hill with him.
BENNETTFrom the top of the hill behind the forbidden city, wrapped up against the razor wind, we can see down into the Imperial Palace and across the city. The next day another movie. Then a tour around Tiananmen Square, then dinner, then a night in his room, then a night in mine. Soon he is writing his reports after midnight at my interpreter's desk, while I struggle to get a story through the (word?) telex machine, and I am setting up a portable typewriter on a TV table in his bedroom. Why do I keep meeting with this man?
BENNETTAt 44, he's 12 years older than I am. He's chubby. No. He's overweight. He wears owl glasses and bowties. He's crazy, and we're angry with each other almost 24 hours a day."
REHMAmanda Bennett reading from her new book "The Cost of Hope: The Story of a Marriage, a Family and the Quest for Life." Amanda Bennett is an executive editor at Bloomberg News. She's held senior editorial positions at the Philadelphia Inquirer, the Wall Street Journal and the Oregonian, where she won a Pulitzer Prize. Just an incredible beginning between the two of you. How could you ever have imagined that this man who gave you a lift home from the airport would turn out to be your beloved husband.
BENNETTYou know, that -- I think that kind of conflicted love story has been true throughout literature. I'm not sure it always works out quite so well in real life. We certainly did have a very conflicted relationship. We were both strong and we were both right a hundred percent of the time, and that often makes for a very interesting relationship. But through the course of his life, we managed to figure out how to turn that to working with each other.
REHMHow long after that evening about which you've just read were the two of you married?
BENNETTIt was about three years later after we had both returned to the states. We never did get married in the Great Hall of the People, unfortunately.
REHMIt was how many years that the two of you finally ended up being married?
BENNETTWe celebrated our 20th wedding anniversary shortly before he died.
REHMAnd he had been sick for seven years?
BENNETTHe had been sick for seven years. So he was first diagnosed in the year 2000. Well, it was by accident. It was an accidental diagnosis. We were looking for something else. He had had some, you know, stomach problems, and on a scan the cancer showed up, and we were actually quite annoyed at the doctor for pointing out that there was cancer on the kidney. That wasn't what we were looking for, and we didn't want to be bothered with the cancer. It was like go away, leave us alone, solve the problem we came in for, and don't talk to us anymore.
REHMBut then he had to be treated pretty quickly.
BENNETTYes. Yes. He had to be treated very quickly. The doctors actually were a little bit more responsible than we were, and they brought us back in. He had surgery and then we, you know, kind of hoped we were returning to normal life.
REHMAmanda, you did have lots of years of travel, pleasure, joy.
BENNETTWe had a tremendously interesting and fun and adventurous life. This was a guy who thought great fun was to move every single year. And so when my career sent me across the country from New York to Atlanta to Oregon to Kentucky, you know, back to Philadelphia again, he thought that was just the best fun ever, and every time we moved he reinvented himself with a new identity in order to be able to follow me.
REHMSo what was he doing in the meantime?
BENNETTYou know, he started out, he was -- when he was in China he was an agricultural expert, and he worked for the American Soybean Association helping sell agriculture to China, and then in New York obviously there's a not a lot of soybeans there, so he reinvented himself a couple of times. He did gourmet food, you know, promotion, and then he was a real estate appraiser, and then one day when I was working at the Wall Street Journal, I looked up and there he was in the cafeteria. He had reinvented himself as a radio newsman and was working at the Wall Street Journal, and hadn't bothered to tell me.
REHMSo this man some might think had some really quirky behaviors to say the least.
BENNETTHe was very quirky, but he was also very much engaged in the world. He cared deeply about the world, and he cared deeply about his family. He was a terrific dad to our two kids, and he was also, you know, just amazingly supportive to me. The reason he was reinventing himself was in order to follow me, and not only follow me, but make me do the things that I was afraid of doing. So quirky and yet amazingly wonderful.
REHMHow long after you were married did you have your first child?
BENNETTWe had our first child, let's see now, about 18 months after we were married. We had a little boy, and then several years later we adopted a little girl from China. So we have two kids.
REHMNow, you have not included anything about the children in the book.
BENNETTYou know, there was a lot of very intense things with the children, but they gave me their permission to go ahead and tell their dad's story and my story, but they didn't give me their permission to tell their stories. They were children during most of the part of the time he was sick, and they were teenagers when he died and they're very protective of their own feelings about him and about their relationship with him, and, you know, I think perhaps someday they'll want to tell their own stories, but this is not their story. This is to story of me and Terrence.
REHMAnd why did you decide to write this book including all details about the cost of the illness?
BENNETTYou know, after he died, I think like with most people, I think this story is very, very typical that, you know, no matter what I did, whether I did a lot or a little, I wondered did I do the right thing? So I'm thinking did I do the right thing, and then there became the conversation about the death panels, and I started thinking, well, wait a second. I could have used somebody to help me.
REHMAmanda Bennett. The book is titled "The Cost of Hope."
REHMAnd if you've just joined us, Amanda Bennett is with me. She's written a memoir, the story of a marriage, a family and the quest for life. Her book is titled "The Cost of Hope." And in her book, she writes, "I set out to find out the cost of Terrence's care and of the drugs that may or may not have prolonged his life. I secretly hoped to find out something else. Did I do the right thing?" Doing the right thing, it would seem to me, happens minute by minute.
BENNETTI think it does happen minute by minute. And afterwards you wonder, did I do too much? Did I do too little? What should I have done differently? And so when I began hearing the conversations about a year after he died about death panels I thought, well wait a second, I am an investigative journalist as well as a widow. I can look at both questions. I can go back and I can get all the medical records and all the insurance records and I can find out what everyone else was thinking.
BENNETTWhat were all the doctors thinking? What were all the pathologists thinking? What were the people in the hospitals thinking, while I knew what I was thinking. So I could look at those two things together and I could try and figure out what decisions we made and how much did they cost along the way? And did we -- were they worth it? Were those things worth it?
REHMDid you have difficulty finding out those facts you were looking for?
BENNETTYou know, if I hadn't worked at Bloomberg and had a really good colleague -- one thing we know at Bloomberg is data. And so I can go -- I could go as the widow -- I had the right to go and collect all those documents. But once I got them I realized that without a skilled data manipulator I couldn't figure them out. I'm reasonably intelligent but without someone to take those 5,000 pages of documents, put them into spread sheets, analyze them, link them up together, I couldn't figure out what was going on. It took that much work.
REHMSome of the real surprises you discovered were in regard to CAT scans.
BENNETTWell first off, one of the things I realized is I -- we didn't even know how much care we were consuming. So if you would ask me how many CAT scans he had had over the course of his illness I would've said maybe a couple dozen. It turned out he had had 76 CAT scans in the course of his seven-year illness.
REHMEvery single one ordered by a doctor.
BENNETT...some doctor for some good reason. I don't think they were frivolous.
REHMBut there was no coordination.
BENNETTBut there was no coordination. Everyone was just doing what they thought was best at the moment. And the interesting thing, because I change jobs so often I was able to actually see something that most people never get a chance to see, which is how much various things cost when nothing else changed except which insurance company was paying.
BENNETTSo the first scan he had in one case towards the end of his illness they were -- it was billed at $3300, and so the first insurance company reimbursed the hospital for 2500 of that 3300. Three months later, same hospital, same person, same machine as far as I know, new insurance company -- that's the only thing that had changed -- and they reimbursed the hospital for $775. So what's the difference? I mean, is it a $3300 CAT scan, is it a 2500 CAT scan, is it a $775 CAT scan? Who knows? It just had to do with who was negotiating what.
BENNETTAnd the other really surprising thing we found that we weren't supposed to find is accidentally in the documents that we got. We found one bill from a person who wasn't related to us but who was self-paying, paying himself. He didn't have insurance. And he paid $1800 which is almost three times what the insurance company was paying. So the individual without insurance was paying way more than the individual with insurance.
REHMAnd ultimately, what was the total cost of Terrence's care?
BENNETTUltimately, the bill for the total cost of his care was $618,616. Now once you looked and calculated what the actual payment was, once it had been negotiated down it was something around $250,000. So where did that other $400,000 go? Who knows? It just got negotiated away.
REHMSo most of this burden, you write, falls onto employers.
BENNETTThat's right. You know, that was another thing is, you know, I just had this hazy feeling that, you know, insurance was paying this in some way. But the fact is because my insurance came from my employers really the insurance was just an administrator. The employers were actually the ones writing the checks. So they were the ones that were bearing the cost of Terrence's illness.
REHMSo, Amanda, did you find yourself beginning -- after obviously he had died and feeling as though you had to do everything you could to try to help him stay healthy, did you find yourself feeling guilty after you looked back?
BENNETTWell, after I looked back -- I mean, really I was uncovering some of my hidden feelings which was there was a secret feeling of guilt that maybe I had pushed all this stuff and I had been so aggressive because I couldn't bear to lose me, not necessarily because he wanted to do it. I wasn't sure about that and I think that's something that people, you know, really need to ask themselves sometimes because they want to -- they want to keep their loved ones alive. So that was one thing I investigated with the doctors to ask myself was I being selfish about this.
BENNETTBut the other thing, in which I know we both lost out, is that, you know, I was gung-ho. We were pushing ahead. We were trying to keep him alive. Right up to the last minute I really couldn't accept the fact he was dying and so we never did get a chance to say goodbye. He had a stroke and went into a coma before I really realized he was dying.
REHMThere a part of the book beginning on page 211 I'd like you to read.
BENNETTSo this takes place in the emergency room. We've just rushed him to the hospital. It's very late in his illness. It's close to the end, although I don't realize it at the time. "I see the numbers on the oxygen monitor above his head drop, 99, 95, 86, 78. Then the oxygen begins to flow through a tube and his numbers rise again. Oh, that's better. This can be fixed. We have to keep him well. We've got to keep him well long enough for the (word?) to kick in, I tell the emergency room doctor.
BENNETTI can read the inner dialogue on the physician's face. One of those. He's never heard of (word?). I might as well say unobtanium (sp?) . I can hear the doctor's thoughts. I have a very sick man here, one who doesn't know the date and whose oxygen levels are dropping precipitously, he's thinking. And she's waiting for a magic pill.
BENNETTHours pass and Terrence grows querulous. I want a Coke, he says, I want a Coke. Is surgery ahead? Is a crisis looming? The doctor won't risk filling Terrence with liquid so we dip a sponge in coke and wet his lips with it. Terrence gets angrier. I want a Coke, he demands, I want a Coke. At 10:04 pm Terrence is admitted to the Intensive Care ward where Dr. Eric Goran (sp?) is doing his last Intensive Care overnight shift of a three-year residency.
BENNETTIt is here in a break room on the Intensive Care floor of the University of Pennsylvania hospital in the hours between midnight and dawn that this 29-year-old not-quite doctor and I stand beside vending machines selling soft drinks and chips and square off for the battle that is at the core of end-of-life decisions all over the world. Is this in fact the end of Terrence's life?
BENNETTNeither Dr. Goran nor I yet know the real outcome, but this will be a relatively short skirmish. Later, looking back, I will realize once again that the way I feel at this moment is one of the keys to the end-of-life debate. I still honestly don't believe that it's the final battle. Despite the overwhelming evidence I believe only that we are facing long odds, not hopeless odds. The picture in my head is not of an increasingly gruesome fight over the empty shell of a person. My picture ends with Terrence rising from his hospital bed, fragile and frayed perhaps but back to his old self.
BENNETTIn my mind, this is still a temporary crisis that ends with his getting back to something like normal. I'm not pushing (word?) on him thinking how many days it will buy him. I'm thinking weeks, months, years. Even here, even now, I still do not see this as an end-of-life battle because I still do not see it as the end of Terrence's life. On one side of that small break room, Dr. Goran sees a man who is dying, perhaps tonight. In the other corner, I still see hope ahead."
REHMAmanda Bennett reading from her new book "The Cost of Hope." You really were believing right to the end that there might be a magic pill.
BENNETTWell, and the fact is you're working in a context in which there are absolutely remarkable medical advances. This was not a lunatic thing I was doing, even though I really was I think blind to what was going on. But we had a -- an oncologist, Dr. Keith Flarity (sp?) who has staked his life and his professional reputation, his professional livelihood on these new targeted therapies. And, you know, we were in a clinical trial that we do believe did gain him some life. And those drugs are helping other people. People are living much longer with kidney cancer than they used to because of these drugs.
BENNETTThe question is in my mind was I seeing extending his life a little bit or was I actually, as I say in the passage, really just fantasizing that this pill was going to bring us all back to normal.
REHMAnd so when you hear the arguments again and again that more money is spent on the last few months of life than almost the rest of our lives, I mean, what does that argument say to you?
BENNETTWell, I mean, partly it's that we don't actually know -- if somebody said that three days later he was going to die I would have made a much more rational decision. I wasn't seeing it that way and, you know, some of the other people around me weren't seeing it that way either.
REHMBut if some of them had seen it and had said it do you think you could have accepted it?
BENNETTI don't know whether I could have accepted it 100 percent, but I do think that for all of us in this circumstance, one thing I did discover is that in the end-of-life decisions, the way they're done now, there are no bystanders. No one is a bystander. The oncologist wasn't a bystander. The hospital wasn't a bystander. The insurance company wasn't a bystander and I certainly wasn't a bystander.
BENNETTSo there's all these competing agendas going on and it would be really nice to have someone standing outside the process to at least coax us all through seeing what's really happening. And I think it could've influenced our decisions.
REHMWe talked the other day to a person who has been diagnosed with invasive breast cancer who determined that rather than go through chemotherapy, radiation, all the other perhaps curative measures, she would opt instead for palliative care. Did anyone talk with you about palliative care?
BENNETTWe did not -- we used a palliative care physician, but that wasn't associated in our minds with end-of-life care. It was to make him more comfortable. And, you know, even the palliative care, as with this woman that you talked to, you know, she isn't rejecting all treatment. She's just rejecting the treatment that's going to make her really sick. And we did the same thing. You know, he took some much more conventional treatments early in his disease where it really, really made him sick. And he opted out of those. He said, I don't care what that's going to do for me. I'm not doing that.
BENNETTSo we were not making totally irrational decisions and she's making very -- actually quite close to the same decisions.
REHMAnd you're listening to "The Diane Rehm Show." We've got lots of callers. I'm going to go first to Naples, Fla. Good morning, Greg. You're on the air.
GREGHi, good morning. Can you hear me? The woman...
GREGOkay, good. I just wanted to comment. I went through liver cancer and two transplants within the last six, seven years. And my wife -- it just -- I tried to be a good patient, but she was so courageous and it took a toll on her. I just wanted, I guess, to comment that sometimes the caregivers go through as much or more than the patient. And, I mean, I guess that's my comment.
REHMI think there's a lot to what you say, Greg. What do you think, Amanda?
BENNETTWell, thank you, Greg. And, you know, kudos to you, too. There's a lot of bravery for you as well. But, you're right. I mean, I think the caregivers are often more anxious about what's going on than the patients themselves 'cause the patients have a lot of other things on their mind. But you've got a lot of bravery yourself there, Greg.
REHMWhen do you think the effort to cure Terrence stopped and the effort to simply mediate his disease began?
BENNETTWell, for us it was very late. I mean, he went from Intensive Care into hospice. And hospice -- all that hospice meant was he stayed in the same bed and they stopped treating him and began to give him comfort care and to give me comfort care. So it was the same hospital, same bed, same everything. It was just the last four days. And from what I've learned afterwards in our research, that's very typical. People think that we're going into hospice a little too late.
REHMDo you, looking back, wish you had done so earlier?
BENNETTWell, I wish that we had been able to make him comfortable a little earlier and I also wish that we had -- that I had listened to him a little bit more and had been able to talk to him about what was going on and to...
REHMWhat do you mean listened to him?
BENNETTWell, you know, in retrospect even though I know he was fighting the disease he kept trying to give me lists of things he wanted to give away. And I kept saying, will you stop that? Just stop it. You're not going to die. You know, stop talking about dying. And...
REHMSo it was you who could not, would not.
BENNETTYeah, although he couldn't approach it directly either. I mean, it was just...
BENNETT...it was just funny. He was just giving me lists of -- and as you would know from reading the book he was an absolutely rabid collector. And so for him to think about giving away anything was really quite an extraordinary thing.
REHMHe was also quite heavy right from the start.
BENNETTHe was a chunky guy. He was an overweight guy, yeah.
REHMDo you think that that contributed in any way to his suffering, to his illness?
BENNETTWell no, but he was an absolutely textbook kidney cancer. He was a 60-year-old man, an ex-smoker, overweight male. You know, it's absolutely textbook.
REHMSo you do everything you can for as long as you can?
BENNETTThat was what I chose to do.
REHMAnd in retrospect, you look at the money for end-of-life care.
BENNETTYou know, that's why I say there's no bystanders. If you had left it up to me, even though he and I are both socially responsible, I would've spent every dollar in the world to save him.
REHM"The Cost of Hope" and that's Amanda Bennett. We'll take a short break here. We'll be back with more of your questions and comments.
REHMAnd welcome back. If you've just joined us Amanda Bennett is with me. She's a Pulitzer-prize-winning reporter. Her new book about the last years of marriage to her beloved husband Terence is titled, "The Cost of Hope". And five years after his death she's written a book about what that illness costs, not only in terms of the monetary costs, but the emotional cost, the physical cost of being with someone, caring with someone who is dying of cancer.
REHMHere's a posting on Facebook from Rebecca who says, "I'm an ICU nurse about to transition to a position in oncology. I would love for you to touch on the notion of informed consent. Can you talk about how well informed you were on your husband's care? What could the providers have done better to inform you of what was going on and what your options were?"
BENNETTI think that's really, really important because one of the things I only really learned in retrospect was in his next-to-the-last hospitalization really, even though they were scanning him and taking tests and things like that, the doctors in the hospital actually believed him to be dying. And, you know, I caught little whiffs of it, but no one sort of sat down with me -- there was nobody whose role it was to say, look, you know, you and your oncologist believe this, but here's what we believe. Let's talk about how we reconcile those two views.
BENNETTSo everybody was busy
REHMNobody said, we've done everything we think will help him?
BENNETTYou know, they may have thought they were doing it, but it was, just to me, whiffs in the air. And partly, you know, it's hard to get through to me. And it's hard to get through to patients. I'm not in that mindset right now. And so it was only after I read the medical records when I see that they're talking about comfort care that I realize that they really aren't looking to cure him. They're looking to sort of ease the last couple of weeks.
REHMAnd yet they continued to do all these tests that mounted up in costs.
BENNETTAnd this is, again, something I learned after the fact, is when you kind of step into a hospital, you're stepping into a machine. It's a machine that goes forward and does what it does because that's what it does. And somebody comes in, they want to know something they order a test. Somebody else comes in they want to know something they order a test. I mean there were -- I can't remember the exact number, but, you know, 40 or 50 different caregivers that I counted up in his last stay.
BENNETTAnd I don't remember seeing them. I don't remember knowing why they were there. You know, they would come in and they'd order a test. And I'd say, well, you know, who are you? Why are you here? What's your role? Are you the boss? Are you, you know, are you a nurse? Who are you? What's going on? And it was just this kind of swirling of different people.
REHMInteresting. Let's go to Gary who's in Syracuse, N.Y. Good morning to you.
GARYMorning, Diane. It's an honor as always.
REHMOh, thank you.
GARYI worked for seven years at University Hospital, Syracuse, on the ICU's and the emergency department as a social worker. And I'm grateful for the frank discussion. I just wanted to make a plug for what social workers do in cases like this. And unlike any other profession, you know, our obligation was always to help the family confront and process and acknowledge the process of death, take the time that all the other professions might not have and help guide the struggling family through the process with as much care and mindfulness as possible for no charge.
GARYI just wanted to also add, for no cost whatsoever. So I just wanted to contribute that. And I wondered whether your guest had encountered any social workers.
BENNETTYeah, we did, but it was, you know, in the last four days. And frankly that's the kind of thing that I think professionals are looking to do, is to have someone in that role. It might be a social worker, it might be clergy. It might be...
BENNETT...a hospice worker, but someone who's standing outside the process and saying...
BENNETT...you know my only concern is you.
BENNETTAnd that's exactly right. So thank you very much for what you do.
GARYYeah, I always took great pride in being able to occupy that space for you and save all the time necessary.
BENNETTWell, thank you for doing that.
REHMGary, I’m glad you called. Thank you.
REHMLet's now go to Cape May, N.J. and to Dr. Daw. Good morning.
DR. DAWGood morning.
REHMGo right ahead, sir.
DAWI just wanted to let you know that to start with I set up a hospice program and was its medical director for 30 years. And it saddened me to think that the patient received hospice care only four days before he died. Ideally, a good hospice relationship with a patient and family needs at least two weeks, but perfectly it would be 90 days. The reason most of the time that this doesn't happen is because the physician or oncologist tends to treat the patient up until the last minute, making a hospice intervention a crash course in dying.
DAWI was surprised when the author said that no one sort of told her outright, but skirted around the issue, which in 30 years is the biggest problem I had with physicians, especially oncologists in getting the patient the truth. I was sort of interested in your comment and hers.
BENNETTWell, let me be really clear, though. I don't think our oncologist was a bad guy in this. I think he was a good guy. And I will take complete other responsibility for this. I wanted to hear what he was saying. I wanted to hear that we could fix this. I wanted to take the chance. And I don't blame him in trying to push us to doing what we wanted to do. And frankly, I believe, even though, despite his reservations, that Terence wanted to do.
BENNETTI just think that there's somebody that's got to mediate this process and to help us be more clear in understanding when Dr. Flarity says, you know, we're going to extend his life, have someone sit down and say, well, are you serious? Are we talking about two weeks or we talking about three years? What are we talking about? To help me have that conversation a little better. So I think we're all operating, doing the best we think we can. He believes in his drugs. I want to believe that Teren's going to be alive. I think we're just acting very, very human. We're all acting human. I don't see villains in this process.
REHMHere's a posting on Facebook from Scott who says, "I had similar experience with a different outcome with my dad. He was a retired medical professional. Cancer was discovered when a kidney blockage was removed. When cancer returned a year later he decided to do nothing. At least I know the name of what is going to kill me, he said. He remained active until about two weeks before his death. He was admitted to the local hospice on Friday. He died on Thursday. He was 87."
BENNETTAnd I think this is another thing. Why it's complicated and why it's not a one-size-fits-all process. This is all very individual and all very contextual. Your dad at 87 had had a very long and full life and was making a decision for himself that was right for himself. My husband, even though he was 67 and a father quite late in life, had two very young children. He wanted to see them graduate from high school. He wanted to see them graduate from college. He wanted to see our children get married. So he was fighting for a life he was still not done living. And so it's very contextual the choices that you make.
REHMAbsolutely. Let's go to a caller here in Washington, D.C. Good morning, Darcy. You're on the air.
DARCYI've been thinking a lot about this. My husband Ken died almost three years ago by melanoma. He did everything there was to do. He did a vaccine trial at NIH. He did radiation. And it's hard to measure, but there were three reasons that he did it and I'd be interested in the comments. He had a lot of living to do. And he wanted not to have any regrets. He wanted to participate in every clinical trial because he thought it would help other people. And also the longer he could stay alive -- they have almost nothing for melanoma and -- but they're on the edge of some new things.
DARCYThey've discovered some new things since he died, gene work, immunological treatment. You know, there are reasons why you do everything that can help future patients even if they don't help you.
BENNETTAnd Darcy, first off, I'm sorry about your husband's death, but your story seems so close to ours. The kidney cancer world at that point, we were doing clinical trials of things. There was just an explosion of drugs. And probably just a year after Terence died they all got approved. And he was part of a clinical trial that did help that process. And so he was interested in helping other people. He also, just like your husband, wasn't done living his life. And so, again, it's contextual. And partly because -- I mean, you don't want to make the medical advances here -- you don't want to trivialize those things.
BENNETTWe are in the middle of a remarkable period of medical advances and so it's not a crazy thing to think if you stay alive for a little bit longer maybe they'll find something that will help because for a lot of people that is happening.
REHMAnd Darcy, I personally have to say how grateful I am to you that you called. I know and love you and loved Ken very much. Thank you.
DARCYThank you so much.
REHMAll right. And let's go to Robert in St. Louis, Mo. You're on the air.
ROBERTThank you so much for the show. My wife died five years ago this coming October of peritoneal cancer.
REHMI'm so sorry.
ROBERTShe had cancer from the time she was 13. She had seven different types of cancer through her life including over 2000 documented melanomas that she survived. She survived through the grace of the Lord and also through the grace of great surgeons. We never paid for her treatment until she had this last bout. We paid out of pocket. We kept insurance that entire time, paid the top-notch Blue Cross and Blue Shield the entire time of her life. Because we knew that one time there would be a time when you would really need the insurance and they helped -- that we couldn't afford.
ROBERTSo we came to the last time they gave her another three months to live, which they had done six times before. She lived two and a half years. Finally died. She was in palliative care at Dartmouth-Hitchcock Medical Center where they invented palliative care. I was never told, nor was she, one time that Palliative Care was anything other than help manage her pain. We were not indicated that that was a way of just making her more comfortable and waiting for her to die.
ROBERTFinally, I believe that the death panels that were so roundly discussed during the health care debate already exist and they're called insurance companies. During my wife's last care we spent out of pocket nearly a half a million dollars. I was able to save that much money during our life. And the insurance companies, over the two and a half years just kept saying -- Blue Cross and Blue Shield specifically said, oh, well, we have to protect our subscribers. So they would pull back care over a period -- every time we'd go in something was changed.
ROBERTThey rewrite the rules as they need to. The quarter after she died, Blue Cross and Blue Shield of Massachusetts made $4 billion profit.
REHMRobert, I'm so sorry for your experience. And I can still hear the grief in his voice. There are a number of emails regarding Robert's focus on insurance. These are focused on the doctors and the hospitals themselves. Joe writes, "Two weeks ago Joe Kline wrote a piece in Time magazine titled 'The Long Goodbye.' Talking about his experience with both of his parents dying, he discussed the Geisinger model he finally found where doctors are salaried, not independent contracts, and their coordinated care system. One wonders whether salaried doctors might have been more open with you than doctors, perhaps earning a portion of the money that the hospital takes in for each of those tests. No villains, but simply a mindset."
BENNETTYeah, and I think, you know, we did use a facility, the Cleveland Clinic that is quite similar to that.
BENNETTAnd, you know, I don't know if the decisions were made differently there, but certainly the coordination was really very much better there and we did feel like there was an integrated thing where we could see what was going on. It was more transparent. You know, as for the insurance issue, it's, you know, as I say I would have used every healthcare dollar in the world to save my husband, but, you know, when you say that there's death panels now, really what you're saying is that there's rationing now.
BENNETTAnd the rationing is basically whoever has insurance gets care and whoever doesn’t, doesn't.
REHMSo have your views about the health care debate that's going on right now changed at all with the death of your husband and the research you've done for this book?
BENNETTYeah, I think it's a very, very complicated subject. And we've been focusing in the health care debate on the 15 percent uninsured, but my story and the story of the callers that you're hearing are largely of the 85 percent of the people who do have health insurance, either through their employers or through the military or through government or through Medicare. And the issues that I'm talking about are issues that exist even within the context of having good health insurance.
BENNETTAnd I think a big part of the problem, the part that flummoxed me so much was the fact that we had no idea what we were buying. We had no idea what it cost. We didn't have to care about it. The doctors didn't have to care about it. The hospitals didn't have to care about it. It was just this total black box system. And I think that made us not very good buyers of things.
REHMThe book is titled, "The Cost of Hope: The Story of a Marriage, a Family and the Quest for Life". Amanda Bennett, thank you so much.
BENNETTThank you, Diane.
REHMAnd thanks for listening all. I'm Diane Rehm.
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