NEAL CONAN, host: This is TALK OF THE NATION. I'm Neal Conan in Washington. When a life draws to an end family members, caregivers, and medical professionals face a flurry of decisions. Is there something more to try? When is enough, enough? Who gets to decide how much time is left and of what kind of life? These decisions are complicated by technology, conflicting opinions, and of course, emotion.
In some cases there's no time to make these decisions; in others, time passes more slowly than we can imagine. Friends, family, and medical professionals must balance intervention with acceptance and separate their wishes from those of the patient. A new book of essays, "Twelve Breaths a Minute," captures the experiences of 23 people who have learned important lessons from those decisions: conflicted doctors, overwhelmed interns, a grieving mother, a regretful daughter, a 911 dispatcher.
If you've experienced this as a family member, caregiver, friend, or professional, tell us your story. What decisions did you face you didn't anticipate? Our phone number: 800-989-8255. Email us: talk@NPR.org. You can also join the conversation on our website. That's at nrp.org. Click on TALK OF THE NATION.
Later in the program the farmer and folk singer William Elliott Whitmore shares songs about life on the farm, but first "Twelve Breaths a Minute." Lee Gutkind edited the book. He founded and edits the literary magazine Creative Non-Fiction which solicited end-of-life essays. He chose 23 from the 500 or so that came in, and joins us now from member station WQED in Pittsburgh. Nice to have you on the program today.
LEE GUTKIND: Nice to be here, Neal.
CONAN: And the title of the book, "Twelve breaths a Minute" is also the name of one of the essays written by an intern who was working in the ICU who was asked for the first time, just about a month since she started, to let a patient go.
GUTKIND: It was an incredible experience for her, yes. She was an intern only out of medical school for six or seven weeks and a patient came to she met a patient in the intensive care unit. She determined pretty quickly that this patient was brain dead and that the patient there was no hope at all for the patient. And the family members came in, and one of the family members happened to have been a very prestigious attending physician in her hospital.
And they said that they had had a conversation and this is really important and one of the messages of this book is to try to think about having a conversation about how to prepare yourself and your loved ones for the end of life stage.
And they had had a conversation about what to do if and when the time came when their mom, their relative, was about ready to die. And the physician said to this resident, this intern, we would like you to shut off the ventilator. And this was a stunning incident for her.
CONAN: She wrote there was no student in her medical school better prepared than she was and she had never prepared for this.
GUTKIND: Exactly. She said that there was never a course in medical school entitled Shutting Off the Ventilator 101. You learn - you work so very hard to keep your patients alive and then when - and to help the family stay strong. And when the family does, in this case, the absolute right thing, which is to realize that there's no more life in my loved one, it's time to say good-bye to my loved one, and already to have had that conversation with the loved one, and she was taken aback. And even though she realized she would be doing nothing wrong from a legal point of view, she thought for a second ethically and morally is this the right thing to do? And then she realized one other thing: she had no idea how to turn the ventilator off.
CONAN: To literally pull the plug. Yeah.
GUTKIND: Exactly. What do you do? And she eventually had to go to a nurse to ask what the proper procedure was and she did it and the family was sad but also quite appreciative that she did that work. And interestingly enough, 10 years later the essay - she kind of comes back near the end of the essay and she sees this physician for the first time in a long time at a party at the Smithsonian Institution and the reception, or the party, had to do with traditional schooling in the Midwest.
And it turns out that the woman who died was a teacher and the Smithsonian had taken all of the rudiments from the classroom and set it up in the Smithsonian to talk about education. And the doctor was there, the attending physician was there, and thanked her for taking the time to do the work in that surprise situation and for doing it so well.
LEE GUTKIND, AUTHOR: And it was something she had been thinking about for so long and finally it gave her that kind of satisfaction in knowing that she had done the right thing.
CONAN: One of the essays in the book was written by a leukemia specialist named Dr. Larry Cripe who joins us now from WFYI Public Media in Indianapolis. And nice to have you with us today.
Dr. LARRY CRIPE: Thank you.
CONAN: And could you tell us about Miranda Thomas?
CRIPE: The essay that the Miranda Thomas was a young woman I took care of very early on in my independent practice. And similar to the young intern Lee was just talking about, I realized at some point when I was caring for her that she was going to die, despite all that we could do medically and all my intelligence and the intelligence of my colleagues.
And I came to this sudden realization I had never learned how to do that. And I did not know how to support her. I knew somewhat how to help her make decisions and her family make decisions about end-of-life care and when to withdraw support, but I was nagged for a number of years by the fact that I never supported her as a human being.
CONAN: Yet at one point you - as she's leaving the hospital, you gently place a shoe on her foot. She's in great pain because of swelling. As the shoe slipped on with only slight resistance I looked up and said a glass slipper for my princess. I love you, Miranda Thomas.
CRIPE: I did. And I think if reflect back on that moment, I think really what I was asking her was for forgiveness that I wasn't better prepared, and also to assure her that as I was transitioning with her to end-of-life care that I was there and I was glad to be there.
CONAN: And the decisions you went through with her, the last one an experimental - a procedure that you knew was very unlikely to succeed, yet you also write that she was very much in favor of it.
CRIPE: Well, I think the hardest thing people with a life threatening illness confront and have to discern between is when is an opportunity to live longer worth taking that opportunity. And I'm mindful to this day that I probably influenced her choice to some extent and that the choice of something that may end up with a longer life was also there.
CONAN: We're talking with Lee Gutkind who's the editor of the book "Twelve Breaths a Minute," end of life essays. By the way, in that earlier story about the intern in the ICU who was asked to turn off the ventilator, twelve breaths a minute is the rate at which it is set, that is the rate at which we breathe in deep sleep.
Also with us, Dr. Larry Cripe, a leukemia specialist whose essay in the book is called "The General." We want to hear from those of you who've had to make decisions at the end of life. What did you learn from them? 800-989-8255. Email us, talk at npr.org, and let's see if this - an email we have Eleanor.
My essay, "The Resurrection of Wonder Woman," appears in this collection. I'm delighted that Mr. Gutkind is raising awareness about end-of-life issues. The pieces in this anthology are amazing, each one unique, an intimate view of how we die and how we love. The two are inextricably linked. This is an important, sometimes painful, often inspiring conversation. And painful, it is, Lee Gutkind. This is not a happy subject for a book that you're hoping, I assume, will zoom to the top of the bestseller list.
GUTKIND: Yes. It is not a happy subject and it probably won't zoom to the bestseller list, but on the other hand, it's probably the most important subject that we all need to learn to talk about. We all die and so very often, physicians, family members, the person who is in fact dying, never have an opportunity to talk about this what the Jewish Health Care Foundation calls the last chapter in your life.
And I think that that's really important that we begin to talk about it and to kind of make plans for it and the resurrection of Wonder Woman, a great essay by Eleanor Vincent, is about donating your organs or signing the form to donate your child's organs when, in fact, you see your child looking still alive, breathing on a ventilator, but still being vivid and alive to you.
And making that decision to say goodbye to someone that you love deeply and knowing that it's the best thing to do. And I know it took Eleanor a long time to decide that it was the best thing to do, but this is the kind of decision that we all have to make, whether it's with donating your organs or turning off a ventilator, these are decisions that we all need to face up to sooner rather than later.
And some of these essays just kind of make you - I would recommend that you read one or two essays and then you just kind of close up the book and go think about it for a while because there are so many different points of view. The 911 operator who begins the essay by saying that one morning she loses three people. And you know she loses three people without seeing them, without knowing them, but having the opportunity to kind of make some sort of impact on their lives.
And the child who has to take care of the parent when the parent grows older; there's one essay here about a woman who regrets or thinks she might regret saving her father's life in a swimming pool accident because perhaps he lived much too long, longer than he should have lived.
CONAN: He was on the last lap and she knew, even then, that the last lap was not going to be a pleasant experience for him or her, yet she saved his life, anyway.
CONAN: We're talking with Lee Gutkind, who is the editor of "Twelve Breaths a Minute: End of Life Essays." There's also on the line with us Dr. Larry Cripe, a leukemia specialist, the author of one of the essays in the book called "The General," who also records radio essays for WFYI, our member station in Indianapolis.
If you've made decisions at the end of life, whether as a medical professional or as a family member, give us a call. What did you learn from it? 800-989-8255. Email is: talk@NPR.org. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION from NPR News.
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CONAN: This is TALK OF THE NATION from NPR News. I'm Neal Conan in Washington. We face all sorts of unexpected decisions as members of our family, our friends, our patients near the end of their lives.
Catherine Musemeche(ph) is a surgeon. Her mother suffered a ruptured aneurism, forcing her to switch back and forth between the roles of physician and worried daughter. She's among the contributors to the new collection of essays, "Twelve Breaths a Minute." You can read about how she struggled and what she learned in her essay from the book at our website. Go to NPR.org and click on TALK OF THE NATION.
If you've experienced this as a family member, caregiver, friend or health care professional, tell us your story. What decisions did you face that you didn't anticipate? 800-989-8255. Email: talk@NPR.org. You can also join the conversation on our website. Go to NPR.org. Click on TALK OF THE NATION.
Lee Gutkind edited "Twelve Breaths a Minute: End of Life Essays" and also with us, Dr. Larry Cripe, an Associate Professor of Medicine at Indiana University School of Medicine and a contributor to the book. And let's see, we go next to Steven with us from Provo in Utah.
STEVEN: Yes, hello. Well, I've actually lost two children to untimely illnesses. One had a heart transplant and died 14 years later and the other died after seven years of relapses with leukemia. I guess that the first unexpected decision is that after his first relapse, the head of Oncology at Primary Children's Medical Center in Salt Lake said there's really no data on whether to tell us whether it's better for him to have a bone marrow transplant or for him to go through a protocol of more intensive chemotherapy.
So he gave it to us and my son decided to not have the bone marrow transplant so that he could have his senior year in high school and we're satisfied with that.
CONAN: But effectively, the doctor handed you a coin and said, "Here, you flip it."
STEVEN: Well, yeah. We asked him many times, so you tell us what you think is best. And he said, yes, I'll tell you. And then when it came down to this decision, the head of the pediatric bone marrow transplant team thought he should have a bone marrow transplant, but the head of pediatric oncology said, "Well, there's just no data. It's really up to you."
And our boy wanted to have a senior year in high school, which he couldn't have had if he had a bone marrow transplant, so he did that. He later had another bone marrow transplant and then two subsequent relapses and then passed away.
CONAN: I'm sorry for your loss, both of them. Dr. Cripe, I wanted to bring you in here. Those kinds of decisions are the kind of thing you do every day.
CRIPE: Yes. And I'm also very sorry for your loss. I think that you were very lucky that they drew you into that decision as much as they did, although I suspect, going through it, you did not feel very fortunate. But there are many decisions that we make and I think decisions that have implications to the quality of the life we want, the length of the life we want, often come down to there is no answer other than the answer that's in the person's heart. And what do they want to do?
And I'm very grateful that your son had his senior year and I think that he made a decision that was best for him. That decision may not be better for other individuals, but for him, I think he made the right decision.
STEVEN: Well, of course, we love the people at the hospital to an unspeakable degree. We love them, but then also we feel that we were part of every decision and that we were never in the dark. We knew what to expect. Even at the end, the doctors said, well, we don't know. We just don't know what to do now. They asked us whether we wanted for them to try resuscitation when he had his last infection and got really sick and went into arrest. And we thought that was best and we have no question that everything that could have been done was done. But we're grateful, we're very grateful.
CONAN: Steven, thanks for the call. There's a quote that you cite in your essay, Dr. Cripe. In 1970, the Yale theologian, Paul Ramsey asked in his book "The Patient as Person:" Ought there to be any relief for the dying from a physician's search for exquisite triumphs over death?
CRIPE: Yes. Let me say I think that quote would be a bit outdated today. But I think there was a struggle around the time that medical technology was exploding and we could suddenly - the people who taught me could suddenly conceive of doing things that had never been doable before. And I think there was a need for medicine, the teachers, the practitioners to begin to understand that the ability to do something does not justify doing it and that, first and foremost, this remains a very human activity, flawed as every human activity is.
And I appreciated the caller's sense of gratitude and I appreciated his use of love and I do think, as I've gotten older doing this work, it is very close to love, what happens in these relationships as we work through these decisions for which the heart ultimately must guide us.
CONAN: Here's an email we have from Mark in Fort Leavenworth in Kansas: When my wife entered hospice care after battling cancer for nine months, I had complete confidence in the organization's competence. What I learned was that hospice organizations experience the same challenges as other organizations. When my wife asked to be admitted to the resident hospice facility, the nurse told us it was not time for that yet and she would be discharged as soon as a doctor examined her. Less than 24 hours later, after I pleaded tearfully with the hospice team leader to admit her, my wife died in the ambulance on the way to the facility.
Again, all human efforts are open to frailties and mistakes, but Lee Gutkin, one of the lessons that we learn in reading this book is that alternatives, hospice care, palliative treatment - treating the symptoms rather than trying to cure the disease - that these are being presented as alternatives more often.
GUTKIND: They are being presented as alternatives more often, but I must say not often enough and Larry mentioned that it is important to say that some of these decisions and some of the actions of physicians are done through love and caring and emotion. But very often, physicians are also kind of acting out of defensiveness and fear at the same time and one would hope that our medical schools and the hospital teaching units would be able to introduce to the doctors. The doctors have more power than anybody else, perhaps, in a hospital atmosphere.
Introduce to the doctors the idea that they need to, in fact, look at their patients in both ways. Everything that they can do that technology allows to save and everything they can do that technology and common sense and love allows to make the family and the patient feel better about what's going on and understand what's going on.
Steve's experience, to me, I think was pretty unusual, that he was able to be part of the treatment team from the beginning to the end. And the hospice care generally - we all think that all you need to do is call up a hospice and enter into it if that seems to be what you want to do, but it's much more complicated than that. Medicare doesn't take care of all of the charges, especially if patients decide that they want to die at home and not in a hospice. The system needs to be examined and retooled.
CONAN: Let's go next to Mark with us from Wichita.
MARK: Well, I had kind of a unique experience. My father was in an accident and had a head injury and I'm a physician and followed him through the whole treatment and CT scans and everything. He ended up on a ventilator and it didn't look like he was going to make it, but you know, I was so traumatized and the surgeon I knew and the residents I knew. The residents were mostly speaking to my wife, who's also a physician, and I don't think anybody ever came out and told me that he was gone. And they definitely didn't - I think they thought I knew what was going on just because I was a professional.
And so I think what I learned from that was, you know, I really need to present not only the physical attributes that are going on, but also how to help these people make these decisions.
CONAN: It's an odd question to ask. Was it more easy or more difficult because you did have a lot of insight into what was going on?
MARK: I think, once my wife convinced me that it was the end, it was very easy for me and then it was my job to convince the rest of the family that was an OK thing to do. And they were upset with me when I brought it up, you know, but it made it a lot easier.
CONAN: Dr. Cripe, this is something you discuss in your essay.
CRIPE: Yes. I think that being a physician, in my experience, does not make these transitions any easier. I've gone through both with both parents. We had to make decisions about limiting care and on one hand, I think that my sisters were gratified that I had the knowledge. On the other hand, I think it was somewhat debilitating because, as one of the callers mentioned, no one could tell them what would happen next. And all you're left doing is speculating and trying to discern, once again, for you and the people involved what decisions you'll walk away with feeling the most positive.
CONAN: Mark, thanks for your story. We're sorry for your loss.
MARK: Thank you.
CONAN: Bye. Let's go next to - this is Elisha. Elisha in Rochester, Minnesota, the home of the Mayo Clinic.
ELISHA: Yes. Hi - hi, thanks for taking my call. My mother just passed away a couple of months ago. And I have a - the both sides of the spectrum of this issue where a doctor did not know what to say, did not know what to do, and then a team of doctors who knew exactly how to handle the situation. My mother arrested suddenly in my car while I was in a store. And when I came back out, called 911, I didn't know what was happening. She was put on a ventilator against my wishes in the ambulance.
And so when we got to the emergency room, she was on a ventilator, something that she had said expressly her entire life she did not want. She never wanted to be incapacitated like that or be on any artificial means whatsoever. And when I said that to the doctor in the ER that I wanted them to remove that ventilator, he said to me, I'm not comfortable doing that here. And I looked at him and I said, your comfort means nothing to me in this situation. This is not what I want or what my husband wants. This is what she wanted.
So they had to admit her. And when we went upstairs to cardiac ICU, we were looked after by the most amazing team of people: an internist resident, a consultant, a wonderful nurse and a ventilator specialist. And they knew exactly how to handle the situation. They pushed us as far as they needed to to ask us the right questions so that we felt confident that we were making the right decision for her. They did diagnostics on her and told us what her prognosis was. And when we finally did take her off the ventilator, they were right there with us.
So - and I was so grateful that they were there. So it was the scene that she would've wanted to have made it. They were an amazing team of professionals. I just were so lucky that they were there.
CONAN: Thank you, Elisha. I don't know what to tell you. I'm sorry, but I'm also glad that it worked out.
ELISHA: Yeah. I am too. We were very lucky. And so I think it is a difficult situation. I know that the doctors aren't schooled in this very often, but I'm telling you the people that we worked with there are - were beyond my wildest expectations. And if my mom had to die that day, I'm so glad she was there.
CONAN: Dr. Cripe, you understand the ER doctor's concern?
CRIPE: Absolutely. And I think that with our respectfulness, what happened is apparently not that her mother was taken to the intensive care unit and withdrawal immediately occurred, but rather it sounds like they made sure withdrawal from a medical standpoint was the correct thing to do.
I also think - and we don't like to do this, but I think those people who are having those conversations, there are legal requirements in most states to notarize those conversations. And I think the ER physician may perhaps could've used different language, but I think, on whole, he responded the best way he could to a very difficult situation.
ELISHA: She had a DNR that I had removed from my purse before we left the house, ironically, and I told them that. In hindsight, I'm glad she was admitted because the team upstairs did exactly what needed to be done. I think what he should've said - because they did talk to legal outside the emergency room, and I think what he should've said was that when you do take someone off of a ventilator, in most cases, they don't die right away. It could be five hours. It could be a couple of days, and so that removing someone from a breathing apparatus is not something that they do in the emergency room because who knows how long that person can be alive after that.
CONAN: Elisha, thank you very much for the call.
ELISHA: Thank you.
CONAN: Here's a couple of emails. This from Heather. I've had to make the decision to turn off machines, enter hospice or give only comfort care for my father, my mother and my sister. Quality of life is important to me, so I've instructed my children and written in my health care directive that I want no artificial or sustaining life efforts. In fact, I joked if they don't follow my instructions, I will come back and haunt them.
And this from an anonymous emailer: I have somewhere between six and 24 months yet to live. I have discussed my end of life preferences with my family, and I have a living will. But beyond that, I have no idea what to discuss nor particularly want to. My preference would be to die alone in a hospital.
And, Lee Gutkind, that's - given what we know, that's unusual. Most people would prefer to die at home.
GUTKIND: Yes. I think the figure is something like 98 percent of the people would prefer dying at home with their loved ones and with - in a comfortable atmosphere. And dying in a hospital is not necessarily a choice you can make anyway. Some hospitals do have hospice units, but, you know, obviously, the hospital tries to eliminate the patient, get the patient out of their different units as fast as possible. So that's really not a terrific option.
The options are that in certain circumstances, you can, in fact, spend your last days and weeks in a hospice. But in most cases, most people prefer and the obvious option is to die at home with your loved ones. And when you do, there are hospice nurses who will come regularly to take care of you in your home. They won't stay there with you all day, but they'll come on a regular basis and make sure that you're comfortable.
CONAN: We just have a minute left. Dr. Cripe, I was wondering if you think doctors or nurses, health care professionals, do you think they deal with this any better than the rest of us when the time comes?
CRIPE: Probably not. I think that we, too, bring to the decisions a lot of biases and preferences and hopes for the future. And there are some, I'm sure, who think that medical technology has little to offer them and some who want to avail themselves to all medical technology.
I do want to just briefly say that dying at home, I think, if that's a person's preference, that's a good thing to support, and we should work very hard to do that. For many people and many families, care needs are very great, the emotional distress of going through the process. So I think we, as a society, need to not think about home, hospice, hospital, bad, good, but think about how do we make these decisions soon enough so that we can all have our preferred care as we die.
CONAN: Dr. Larry Cripe joined us from our member station in Indianapolis, WFYI Public Radio. Thanks very much for your time.
CRIPE: Thank you.
CONAN: And Lee Gutkind is the editor of the book "Twelve Breaths a Minute: End of Life Essays." He joined us from member station WQED in Pittsburgh. Thanks to you, too.
LEE GUTKIND AUTHOR: Thank you.
CONAN: Up next, William Elliot Whitmore, farmer and folk singer. Stay with us for that. It's the TALK OF THE NATION from NPR News.
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