Transcript: On Your Terms - A Conversation About End-of-Life Care
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Good afternoon and welcome to Frankly Speaking About Cancer with the Cancer Support Community. Your host is Kim Thiboldeaux, President and CEO of the Cancer Support Community. This hour is designed to inspire, inform, and to help you live better with cancer. Now here's your host Kim Thiboldeaux.
Kim: Welcome to Frankly Speaking About Cancer. An internet radio show that focuses on informing and inspiring people to live well with cancer. I'm Kim Thiboldeaux, CEO of the Cancer Support Community. The Wellness Community and Gilda's Club have united to become the Cancer Support Community, one of the largest providers of cancer support in the United States and around the world. Our services are offered at more than 100 locations worldwide and online at www.cancersupportcommunity.org.
I've said this before on the show and I'll say it again. At the Cancer Support Community, we're not afraid to look the toughest topics straight in the eye and deal with them frankly and honestly. In the end of Life Care ranks right up there at the top, people will avoid, "The talk!" as long as possible even while acknowledging its importance. For the most part, none of us really wants to deal with our mortality. Yet this is a crucial topic for us to think about as individuals and also to discuss with our families and our medical team. This is particularly important when facing a cancer diagnosis.
A friend brought to my attention the recently released book, Extreme Measures: Finding a Better Path to End of Life. I am thrilled and grateful to have on the show today its author, Dr. Jessica Zitter. Welcome to the show Dr. Zitter.
Jessica: Thank you so much for having me.
Kim: Let me tell our audience a little bit about you. Dr. Jessica Zitter is an expert on the Medical Experience of Death and Dying. She attended Stanford University and Case Western Reserve Medical School and completed her residency in internal medicine at the Brigham and Women's Hospital in Boston. She was a fellow in Pulmonary and Critical Care Medicine at the University of California at San Francisco. Dr. Zitter specializes in both Pulmonary Critical Care Medicine and Palliative Care Medicine and we're going to talk about what that is, but that is a rare combination. She writes for the New York Times, The Huffington Post, Pacific Standard, The Atlantic, and the Journal of Palliative Medicine. Dr. Zitter is featured in the Oscar nominated Netflix documentary Extremists and it's really, really a powerful film. A film that deals with end-of-life decision making in the ICU. You should have some tissues out if you're going to watch it I can just tell you that.
Dr. Zitter, I want to jump right in. We have a lot we want to cover today and I know a lot that is of interest to our audience. You actually began your career as an Intensive Care Unit Doctor, why did you change or sort of shift your specialty?
Jessica: I actually did not plan to do that at all. I went into the Intensive Care Unit fully intending that that was going to be my primary focus in my medical career. I wanted to do the type of intensive medicine that I had seen many of my ancestors, my father, my grandfather, my uncle's, great uncle's practice and it was very exciting to me.
What happened to me over time was that I began to feel this paradigm that I had been taught and had absorbed in this Intensive Care Unit environment was causing a lot of suffering to my patients and I couldn't quite put my finger on it because I didn't have another way to do things. I didn't know any other way to be helpful. As I watched the use of my sort of automatic use of these of these technologies and machines on patients who were dying, I started to think that I was actually causing more harm, and I began to develop this feeling of moral distress.
By complete and utter coincidence and luck, I happen to be in one of the very small number of hospitals in the early 2000s that were starting to look at Communication and Palliative Care at the Intensive Care Unit. This is before Palliative Care was even a sub-specialty in 2003. There was a group of very strong and outspoken people called the Family Support Team which would become their Palliative Care Team who essentially got me to eventually listen to a new approach to caring for patients with serious illness. That's how I was introduced to Palliative Care.
Kim: It's a true sort of real-life experience. Sometimes this can be the most profound for us. Dr. Zitter, I want to just take a step back to make sure our listeners understand some of the terms and specialties will hear discussed on the show today and in dealing with end-of-life care. I think words matter in that clarity matter. Let me go down a list and let's get some clarity on that. You've referenced a couple times in your opening comments Palliative Care. What exactly is Palliative Care?
Jessica: To understand that medical sub-specialty which as I just mentioned is that actually relatively new, sort of since 2008 it's been officially recognized as a medical sub-specialty. You need to understand what the word palliate means. It comes from the Latin-palliare, which means to cloak. You sort of have this vision of this image of a kindly person cloaking somebody who is suffering with wrapping them up and caring for them. That's really how I think of Palliative Care, it's really attending to a person who is suffering on whatever level it may be. There's so many kinds of suffering I learned as I began to learn about Palliative Care. There's obviously the physical suffering which includes pain and shortness of breath, even itching, constipation. A whole variety of symptoms that can accompany serious illness.
It also includes anxiety depression and even a lack of clear communication, lack of understanding what has happened in a very turbulent moment. Palliative Care Clinicians are trained to manage both the physical symptoms that can come with serious illness, as well as the communication jumble and confusion and to try to help sort out communication between patients, families, and the healthcare team caring for them.
Kim: Okay. Let's shift, our listeners maybe more familiar with the term hospice or hospice care. What is hospice care and how does that differ from palliative care?
Jessica: Hospice care is really using palliative care or techniques on patients who are definitely approaching death. Palliative care as you can imagine doesn't necessarily treat patients who are dying. There's a lot of patients who can benefit from palliative care who are not dying, for whom there is suffering but it's manageable and actually can be treated so that they can kind of go on to continue living a life. Whereas, when you talk about hospice principles, it's about bringing those palliative care techniques to patients who are determined to be dying and often delivered in patients.
Kim: Yes, maybe that they've ended their treatment now that's part of hospice right, that there's no more treatment.
Jessica: Right! There has to really be an acknowledgement by the patient and the physician and family that were at a point where the goals of care are not about curing the disease, but really about maximizing the quality of life and not pursuing the kinds of treatments like chemotherapy or other types of treatments that substitute, that are disease focused or organ focused, but really kind of using treatments that are maximizing quality of life instead.
Kim: Dr. Zitter, I've heard yesterday's passing comments about maybe in the US. These conversations about death or end-of-life are particularly difficult. Do you think there are sort of cultural issues or cultural tendencies here that contribute making those conversations difficult perhaps different than other countries or cultures?
Jessica: In my experience, it's true that there is some aspect of this problem that i sort of talk about it and write about a lot, this sort of this lack of accepting death. That feels to me to be somewhat, I wouldn't say uniquely American, but there's a very American quality to it.
I think a lot of other cultures are now emulating our approach and it's starting to sort of become more commonly seen in other kinds of countries that didn't necessarily have this type of approach before. It is this thing very American about trying to apply more and more effort to a problem. It's one of the wonderful things about America, you apply maximal effort to try to deal with a problem.
Since 1940s and 50s, we've had emerging intricate sub-specialties and treatments and technologies that really can start to target in to enhance organ function. We've just taken those things, expanded upon them, built more of them, and start to apply them to any problem that emerges even when it's a patient who's dying. We're using them indiscriminately on everybody and I think that it's one of the beautiful things about America that we always try to find solutions and put our best effort towards things. I also think that in this particular area, it can be illogical honestly and cause a lot of suffering that's not necessary.
Kim: Let's take a minute to just talk about the idea of an end-of-life care plan. I've heard people say that they've told their spouses what their wishes are, "Oh you know, I told them!" They know that. I'm thinking that maybe those conversations have not been as detailed as they should be and perhaps not necessarily documented. Just take a moment to walk us through what a good end-of-life care plan looks like.
Jessica: I'll tell you from the perspective of a doctor sort of in the intensive care units with a tremendous amount of complex technology at my disposal and that I can use on patients. One of the things that I think is most helpful to me is, and not only by the way in the intensive care unit environment but in any environment in the hospital, is to not have necessarily a cafeteria plan of, "Well I do want to use this and I don't want to use that, and I would use this but I wouldn't use that." I find it most helpful when families have actually spoken more about the spirit their end-of-life care plans.
Not to say, by the way that that you don't document things and we'll talk about that in a second. I really think it's important for families to have started talking about the topic of the spirit not about how they want their end-of-life to be, but about how they want to be living all the way until the end. Who are they? What is most important to them about life? Is it critically important that they be fully in control physically of all of their physical body?
For some people, one of my friends told me her father who she said he's a, "Tough old Italian man," he once said to her, "If I can't wipe my own behind, I don't want to live. I don't want you to do heroic things to keep my body alive." For another person maybe even me, I would actually feel that I could live with physical incapacity if I had mental capabilities, emotional capabilities, ability to interact with my family. These kinds of bigger, higher level philosophical ideas about how you want to live are very, very important. Because if you come to a doctor and you say, "Look, this is my father. I know he's not able to talk to us right now, but one thing I know about him is that he would fight to the death." He would want you to fight to the death if you could restore him to whatever thus and such quality of life, these capabilities. If there is not a chance that he will be able to for example, wipe his own behind, I want you to tell me now because at that point I know he would not want you to keep him on these machines.
Those kinds of directives are really important and those don't come down in the form of a check-box or a list of things that you do and don't want. They're more....
Kim: Philosophical and existential?
Kim: Dr. Zitter, we're going to head into our first commercial break here. This is Frankly Speaking About Cancer. We are having a conversation with Dr. Jessica Zitter about her new book called, Extreme Measures: Finding a Better Path to End of Life. We know these can be very difficult and challenging conversations and not necessarily the first conversation on your list that you want to have with your family, but we also know. We'll hear from Dr. Zitter about some of the challenges in not having these conversations and the challenges that families face by not doing so. This is Frankly Speaking About Cancer. I'm Kim Thiboldeaux. We're going to take a quick break. Don't go away. We will be right back.
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You're listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer.
Now here's your host Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is being brought to you in part by AstraZeneca and Lilly Oncology. I'm Kim Thiboldeaux and with us today is Dr. Jessica Zitter, author of the recently released book Extreme Measures: Finding a Better Path to End of Life. Dr. Zitter specializes in both pulmonary, critical care, medicine, and palliative care medicine which is a rare combination. She writes for the New York Times, The Huffington Post, Pacific Standard, The Atlantic, and The Journal of Palliative Medicine.
Dr. Zitter, I want to talk a little bit about the book and congratulations. Well done and really beautifully written. Have you always been a writer, have you had sort of literary aspirations, because some parts of it that are really very descriptive and detailed and really beautifully written.
Jessica: Thank you so much for saying that. I've always written, I remember my 13 year old Journal when we went to Europe as a family. It was always sort of personal journaling and processing of things that were happening in my life.
That didn't stop when I went into medical school and started being confronted with really profound suffering and a lot of just my own emotional experience. It was only really when I started to realize that I had a message that I wanted others to hear, that I needed others to hear, that others needed to hear, that I started to write really for other people. I've always love [Inaudible] [17:37] as written poetry. This was a moment where I started to say, "Wait a minute." This is really only a few years ago when this topic, my palliative care training started to really bloom and I started to see that there was this other way of doing things that didn't in any way disparage the ICU or put it down or but that was a way to enhance my ICU practice.
I just felt, number one that I wanted to share it and to talk about the hopefulness of it. Number two that I didn't see it happening enough that we were talking about these personal challenges and how difficult this was. I felt that I needed to sort of share my experience in how difficult it was.
Kim: Yes, yes. You really in the book take the reader into the hospital room with you. You've write it in and very vivid and sometimes graphic detail. If it's okay I'm just going to read a particular quote that caught my attention. Here I quote, "Bone grinds against bone under my palms, one more strong push and I will crush him. I envision my hands breaking into his chest cavity swamped in blood and tissue." Then later you write, "The eight-minute scroll by the patient's chest clicking like the hand of an old clock." It's powerful, it's graphic, again you pull the reader right in there with you. Did you ever worry that there might be too much for the reader? Why was this level of detail important to you in this writing?
Jessica: Yes. I do worry, I still worry that there are going to be some people who are put off by it. Who might turn away from it, turn away from the conversation because it's disturbing. It is disturbing, this was disturbing to me. It's that's why it has stuck with me all these many years later. I think that so much of the problem that we have, that we find ourselves in right now is that we aren't talking about these issues, these realities. Doctors aren't talking to patients and families about the realities of what can happen. If we go down this path these are the potential scenarios that might happen to you. Its decubitus ulcers and coming in and out of the ice you've back and forth to a ventilator facility.
People have no idea of the reality of what happened and so people get sent off along this path without really being informed on a deep level. I think that, that has gotten us into a lot of trouble. That is part of what I'm trying to correct by really saying it like I remember it and like I've seen it and telling people the truth.
Kim: Who is this book for? Did you write this book with the medical community in mind or the patient, his or her loved one? Who are you trying to reach with these messages?
Jessica: Well, it's funny thing because again never having written a book for anybody. Many different people were saying, "Well, who is your audience here for this book?" My agent was asking me and the publishers and the honest truth as I thought about it and thought about it is that this is actually a book for anybody who might die.
Kim: I guess that's all of us.
Jessica: It's all of us! I mean this book really is, there are messages in this book for the lay public, for those acting as surrogates for another person, there are messages for medical students, there are messages for nurses, there are messages for doctors, there are messages for administrators and politicians. I mean I feel like there is something in, I hope I've tried to make it something that anybody can walk away from and be helped in terms of thinking whether it's about policy change or medical school education or how to manage their sick mother and care for their sick mother and advocate for their sick mother. I'm hoping that there will be something in it for everybody.
Kim: Terrific, terrific. I know that in the book in addition to presenting case studies you explained, in some sense is how we wound up, where we are with some of our deficits in this conversation around end-of-life care. For example, you tell us about the origins of the ICU. Why do you believe the historical context is important to know?
Jessica: It's a fascinating history actually when you look at it. First it's just interesting curve, from an interest sake it's just the rapidity, the rise of this, it's like the bionic man. This rise of technology that happens so quickly from the mid-20th century to the present time. You can imagine now the exponential development of new drugs and technologies even in the past year. Some of the stuff that's come out really literally since 2015 in terms of targeted technologies cancer. It's striking and it really reminds us of the spirit of the human spirit drive to solve problems. Particularly, as I mentioned this American drive to solve problems, that we are just so, it's wonderful.
It also shows us how toxic and how dangerous and how much danger we can get ourselves into so quickly. I hope that by people seeing the sort of this ramping up of this rise independence and celebration of technology in such a short period of time that almost sort of out of our control that they'll understand more about how we've gotten into this situation. How much it's going to take to unhook ourselves from it as well, in terms of our thinking?
Kim: Yes, yes. I want to read another short passage from the book where you recall a childhood event when you were in the hospital getting stitches. It reads, "But looking back so many years later, the terror of being on the side of the needle is still palpable. Even though it all turned out fine, I remember the loneliness as I sat in the cold chair under bright lights. I remember bracing for pain, the needle glinting in my uncle's gloved hand. I remember the silence, the expectation that I would play my part without complaining, without questioning. I remember the powerlessness and the distance."
Boy, that's an early experience that really, did that stay with you or did it come back years later as you were sort of more focused on this work? Tell us about that. Why did you include that in the book?
Jessica: That moment, among many others is a moment that just really comes back to me all the time. Even if it doesn't automatically come back to me I bring it back consciously when I'm caring for my patients. I'll never forget that feelings, that terror that I felt in that moment. This feeling of needing to, wanting to please my doctor, it happen to be my great uncle. My father who was standing there and wanting to be brave and to be compliant and to do it what I needed to do to get better. Also the coldness, this sort of sense that you just need to do this and it was terror inducing for me.
When I have a patient in whom I am getting ready to put some large catheter or do some treatment and they're sitting with terror and not knowing what is to become of the rest of their lives and their disease and also what's going to happen during this procedure. That moment and other moments like that, if they don't come back on their own I try to bring them back just to remind myself and to bring back the compassion that I want to be feeling for all of my patients. That's so trained out of us because we have to sort of you can't feel those moments all the time because otherwise you'll go crazy and you'll feel powerless to do what you need to do. You have to have some elements of it in order to be I think a compassionate as a doctor and it's a tough talent.
Kim: In some ways that moment becomes a touchstone for you. It becomes a sort of an honesty check in terms of how you're interacting with patients today?
Jessica: Right. It's a sort of a do unto others moment of, Wow! Remember when you were sitting in that chair yourself, how would you want, what would you want someone to do for you in a moment like that? It's almost a moral guide and it keeps me honest, it keeps me where I want to be.
Kim: Yes, yes. I'm getting close to the end of our segment here. I'm just going to quickly read another passage and we'll see if we have time to talk about it or maybe we'll do so on the other side and a break. Again a passage from your book, a quote, "It was Thanksgiving Day and there was only a skeleton staff present. My grandmother's urine bag was empty and the blood pressure cuff in the room didn't register a pressure. My worst fears were confirmed, she was in septic shock and dying. Under the surgical residence was answering his or her pager. I commandeered the floor nurse. My grandmother needed fluid. I told her a lot of fluid or she would surely die. I managed to convince her and then I paged the attending physician myself explaining the urgent situation. My grandmother was prepped and draped in the operating room within 30 minutes. A four-hour surgery ensued. She went on to live another ten years." I've got about a minute's alert till our break, but tell me about that quote.
Jessica: Well, that was my first grandmother, who my mother's mother, who had a terrible, terrible cancer and ended up having it resected and was actually going to do pretty well and except for the fact that the anastomosis split open. She ended up getting very septic and almost died and I was a resident. This action here that I told you about saved her life. It was very easy for me, I mean relatively easy for me to scramble this entire operating room staff up on the Thanksgiving, it's Canadian Thanksgiving. It was a completely empty Hospital.
Many years later when my other grandmother started to die in hospice and was needing morphine for tremendous shortness of breath and I was a palliative care doctor at that point and trying to get morphine for her. I was unable to do it because I was being looked at as an uncaring granddaughter. It was easier for me to scramble an operating room team as a resident, a young resident than it was for me to get morphine for my grandmother she was dying in hospice many years later.
Kim: Wow, wow. Two very, very powerful experiences. This is Frankly Speaking About Cancer. We've got a lot more to talk about what Dr. Zitter. Don't go away. We'll be right back.
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You are listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer. Now here's your host, Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: Welcome back to Frankly Speaking About Cancer. Today's episode is brought to us by part by Eisai Corporation, Novocure and Taiho Oncology. I'm Kim Thiboldeaux. Our guest today is Doctor and author Jessica Zitter.
We've been talking to Dr. Zitter about her new book, Extreme Measures: Finding a Better Path to End of Life. Dr. Zitter specializes in both Pulmonary Critical Care Medicine and Palliative Care Medicine. She's featured in the Oscar, nominated Netflix Documentary Extremists, a film that deals with end-of-life decision making in an ICU. It's very, very powerful, so I encourage our listeners to check it out.
Kim: Dr. Zitter, you share your own experiences in the book. To be honest, some of which you don't put in the best light. Are you taking a little bit of a risk by writing with such kinder?
Jessica: Probably. It's the only way I know how to write. Honestly, I don't find it interesting to write without really reflecting. When I reflect, I see things that I wish I could do better. I wish I was stronger or braver.
One of my colleagues once said to me, "The only reform that comes is from a confession." I used to put that in my prologue because I actually really think that's true. I think it's only when we can actually start to reflect on our own behavior and what we wish we could do differently or on our own infrastructure or the system that we can actually start to think about how to reform it, when we accept that there's a problem and then say, "Let's move on and make it better." Part of what I think is the problem that's gotten us into this cultural, this mess. It stems from this failure to really do that, to feel that we need to always have the right answers. We, doctors, always need to know everything and to be perfect.
I really think that that's actually caused tremendous suffering not only for our patients who don't get the information they need, but also for us, and so I hope that we can start to change that paradigm.
Kim: Yes, absolutely. Tell me how have your colleagues and the medical community at large sort of reacted to the book? What kind of reaction are you getting?
Jessica: Well, no one has yelled at me. I'm kidding.
Jessica: I've been really struck by the response that I've gotten from the nursing community. Really, it's so interesting. I mean, many of my colleagues have been very supportive and wonderful but I've really been amazed by how nurses have found this to be helpful. I really appreciate that. As I mentioned, I was sort of taught how to be the doctor that I want to be by a nurse and it was this one, Pat Murphy, who was one of the people who deport with a woman, who headed that family support team at that hospital that I worked out in early 2000, to really kind of taught me how to bring in a more patients and our approach to my patients. I didn't learn that in medical school. I did not learn that in residency. I did not learn that in my fellowship.
The nurses have really listen to this and I think a lot of what I talked about, in terms of this, need to be more of a collaborative approach to patient management. Particularly for all patients, but particularly for patients who are approaching the end-of-life. We really don't do anybody a service by having doctors sort of driving that entire ship. I think that we need to be collaborating with our nursing colleagues and to just make this a more robust team approach. I've been really pleased to feel those kinds of affiliations with the nursing community and my colleagues have also been supportive to me. I'm very appreciative.
Kim: Is there a curriculum in medical school that teaches you how to manage and deal with end-of-life issues?
Jessica: You know, not as many as there as I think there should be. Again, things are changing rapidly in many medical schools. Now it's becoming in many medical schools, sort of an expected... There's this person does Vital Talk Program which you may or may not have heard about, which is a clinician oriented program, that teaches clinicians how to enhance their communication skills, to break bad news, so many of the things that we're not doing well. How to manage extreme emotion, all the things that we were just never taught. Not only medical school, but probably in nursing school as well I would imagine.
I think that there is more of an interest in bringing these kinds of programs and trainings in to medical schools and nursing schools. I really believe that a big part of this is going to have to be inter-professional. I think training inter-professionally. We maybe even using simulators or cases where you have medical students, nursing students, and a social worker sitting together, "Okay. How should we approach this particular situation? How should we talk to each other as a team? How should we prepare before meeting with this family? Who should be in on this meeting?" Those are things that just how we organize ourselves inter-professionally. That kind of training I think is really important and I am hoping that we're going to start seeing more of that. I haven't seen that much of it yet, but I'm confident that we're going to start to see that.
Kim: You alluded earlier in the show to advances in technology science innovation right? This brought some great things to our society, to our care. It's brought better care, it's brought cures, but what do you think has been the impact of technology on end-of-life care, for better or for worse?
Jessica: Yes. I mean, it's such a mixed blessing because I mean, we have done amazing things with technology. I have used technology to really send people back home to their life. Tens of thousands, maybe hundreds of thousands of kids who would have died from polio were sent home to live completely productive lives in the 40s and 50s.
When you have someone who is truly dying and truly approaching the end-of-life, then what you're doing with this type of technology and what I see every day in the intensive care unit, is you're almost suspending them in like a metal cocoon. It's like suspended animation and you're sort of stretching out their death. You can slow the dying process if in some cases, when you put people on machines and I think that is some surveys that we've looked at, and just from in my opinion, my experience with people, most people would never agree to that. They would never agree... If someone said, "Would you like your death to be stretched out? Would you like your dying to be stretched out from days to weeks or from hours to days?" I would say, most people would say, "Absolutely not." Yet, we do these things to people when we know they're dying a lot.
Well, I can't be a hundred percent sure that they're dying. Yes, you can never be a hundred percent sure that someone's dying until they're dead. If we stand behind that, we're just going to keep taking dying patients where we are gut feeling, as we know they're dying. Putting them on these machines when we would never want that for ourselves.
Kim: Yes. I heard one speaker say and I thought this was pretty powerful that, we're much better at delaying death and we are at extending life.
Jessica: That's a very interesting quote. I agree with that.
Kim: Yes, yes, yes. Dr. Zitter, we've got a few minutes to our next break but I just want to go through quickly some interesting statistics that we came across in some of our research and I just want to get your insights.
Number one, is this statistic correct? That 50% of patients die in pain and if that is, why is that and is that preventable?
Jessica: Well the statistic I've seen about pain is 60%. Maybe yours is more recent than mine, but mine was certainly over the past few years. There are many, many, many reasons why I think that might be true. Many of which are things that we see in the intensive care unit, so it's a good example to use about why that can happen. We are taught in IC unit, the blood pressure is probably the most important currency that would be owned there. If you can't keep someone's blood pressure up to a level where at least they're getting some perfusion to their organs, then you've got a problem, and so we do a lot of things to really enhance people's blood pressure.
One of the things I write about in the book is someone has pain, we don't necessarily prioritize thinking about that until we've gotten our blood pressure under control. It's very hard. You're taught to triage in a way. Blood pressure kind of, is the most important one, and so there's one reason why pain may not be attended to as carefully as we would like. Certainly, there's going to be some pain medication but I've had many patients who... I feel like I'm, "Oh, gosh." I'm really not adequately attending to what must be going on in this person's mind and body right now based on not only the pain, the physical pain, but the fear. Because I'm attending to this blood pressure thing, so that's one reason.
Another reason is, when patients are getting sick and starting to die, they can't really communicate with us. If we're not seeing visual images of pain, a person's not wincing or screaming or doing something, we may not necessarily think about pain, we may not even sort of think about treating it if it's not right in front of our faces, and that of course is an issue in the intensive care unit where patients really cannot speak with us. Again, I will tell you that that's getting better and better. Over the past several years, I have watched my residents and medical students be much more attentive to pain and to preempt it and think about it, but when I was a resident, when I was a young attending, I feel terrible saying it but it wasn't the level of priority. It should have been.
Kim: Yes. Dr. Zitter, we got about a minute till the break, but another quick question. According to a survey, by the conversation project, 90% of people say talking to a loved one about end-of-life care is important. Only 27% percent reported that they had done so. Also, I found that 82% say it's important to put their wishes in writing, but only 23% had. To what do you attribute this disconnect?
Jessica: Being human.
Kim: Fair enough.
Jessica: I mean in the book, there's a session called "My Own Procrastination.” I believe that's the title of it and it's really about my personal inability to write down an advanced directive. My husband and I were trying to get this done. It took me years. I'm really ashamed to say that. Years to get this thing turned in. I would take it with me at all of my trips across the country and I always bring my little thing with me. Oh, I'm going to do it on this trip. It's hard to do this stuff, but it's really very, very important and essential to start thinking about these issues.
Kim: Great. Then, after the break maybe we can give our listeners a couple tips about how they can get started and where they can turn for some of that. This is Frankly Speaking About Cancer and we're having a frank conversation with Dr. Zitter about end-of-life care, end-of-life decisions, communication with the family, and really learning a fascinating history, and really discussing what are some of the elements in our society that brought us to this moment today. This is Frankly Speaking About Cancer. We're going to take a quick break. Don't go away. We'll be right back.
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You're listening to Frankly Speaking About Cancer with the Cancer Support Community. An inspirational program offering the resources you need to live a better life with cancer. Now here's your host Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Kim: You're listening to Frankly Speaking About Cancer. Today's episode is brought to you in part by Bristol-Myers Squibb, Celgene Corporation, EMD Serono, and the Takeda Oncology. I'm Kim Thiboldeaux. We've been having a great conversation today with Dr. Jessica Zitter. Dr. Zitter is an expert on the medical experience of death and dying. Dr. Zitter, we've got a few more moments together, so I want to make sure I prioritize really some good concrete tips for our listeners to get these conversations started.
I appreciate your frankness in our last segment about... This is your area of expertise, but it really took you quite a bit of time even yourself to put these documents in place. Somebody's listening today. They're saying, "You know what? I think this is important. I'm going to make this a priority." Where do they get started?
Jessica: Well, there are several different segments to do. The first thing is to really... A part of it also depends on where you are in terms of your own life. You're a relatively healthy person who doesn't have any major health issues and you're kind of 40s, 50s, 60s, or even earlier. You might want to think about starting to have conversations with your family about your priorities and preferences like we alluded to in the beginning of our talk. What's important to you? There are things that you can play like "Go Wish", which is a wonderful card game that really helps you to elicit those values that are most important to you and helps you play the game with those that you love, and so you can kind of guess things and think about things and predict things for each other. That really helps it to stick.
Having that robust conversation within your family is very, very important. I think along with that goes beginning to think about who it is that you would want to have speak with it for you if you could not speak for yourself. Even if you, God forbid, you're 40 years old and you get hit by a car. There should be someone that you have that you feel confident, will be able to make decisions that will go along with what those preferences and values are that you have. That would be done in the form of an advanced directive.
Advanced directives are really... There are twofold, there's two parts to them. The first part is essentially choosing a surrogate. Who is that person? Number one, who you can count on to really channel you as a person when they're making decisions if you cannot speak for yourself. Number two, that person again should be not only the person you can count on, but they should also have that knowledge that we've just been talking about that you can get from things like the conversations in Go Wish.
That advance directive, I think it's very important for step. Those are very, very important things to do. You might want to even revisit those on a yearly basis. I have a friend, Dr. Don Gross, who does this every year on her wedding anniversary with her husband, they've been doing it for many, many years. They play Go Wish and they just recalibrate and think about if anything has changed and kind of just keep delving into these questions.
Those are things I think, are important. Recheck your advance directive, probably every year is a good idea if you can, and figure out if there's somebody different that you'd prefer to have as your surrogate. Then, if you know you're in a situation where you do have more serious illness, you've got a disease of the lung, COPD, emphysema, or you've got congestive heart failure and you're starting to know you have a serious illness. Then, there's other things you can do that I think are very, very important in addition to the things I've just discussed. You want to really [Inaudible] [48:24] getting honest information from your doctor about your illness, about the trajectory of your illness. How are things doing? Are they changing or is there any worsening at all? Does it seem stable?
Acknowledging with your doctor, that you understand this is a life limiting illness, and hopefully, you'll still have years but you may not, and that you are wanting to open up an honest dialogue with your health care team. Hopefully, in this outpatient setting, early on thinking about, "Well, what happens when my heart failure gets serious enough that I might end up getting put on a breathing machine? Doc, can you tell me what are the pros, what are the cons, what's the likelihood that I would come off, what if we put me on the breathing machine and I didn't come off?" These are all conversations that I think are very important to have early on in the existence of a serious diagnosis like kidney failure, heart failure, lung diseases, whatever.
Even though you expect to live many, many years longer, start that conversation with your health care team. I guess those would be the things I would... There's one more piece, which is people say, "What's a POLST form?" I'm sure that some of your readers or listeners have heard about POLST. P-O-L-S-T. It stands for Physician Order for Life-Sustaining Treatment. Most states honor these and they are forms that are essentially signed by a doctor, so it's an official doctor's order. Nobody can legally go against that, an EMT or an ER doctor, anybody else. If you have found a POLST form saying, "Do not do this type of life-sustaining treatment." There's several different ones listed on this form. Then they are obligated to provide other types of treatment, maybe treatment for comfort or whatever, but not to use whatever is listed on that form that you would not want to have.
If you do want those types of treatments, quite frankly, you don't really need to fill out a POLST because that happens by default anyway, but if you do not want them, if you've decided that's not for you then you should fill out a POLST form and have it signed by your doctor.
Kim: Just quickly, Dr. Zitter. Both an advance directive and a POLST form, where do folks get these documents?
Jessica: You can actually get them online. There's state specific. If you live in Arkansas, you want to get an Arkansas specific advance directive or an Arkansas specific POLST form. Most of the stuff is online. There's other websites like prepareforyourcare.org, which is a wonderful website. It walks you through all the different steps to think about an advance directive. It shows you films of people talking and considering different alternatives and it's a really nice media invested approach to serve, learning more about these issues, and helps you at the end create this advance directive type document.
There's many different resources. I think that there's lots of places to get started if you just go online.
Kim: Terrific. I know folks... Again, if they're listening and they're motivated to act and they're motivated to research and explore some of these issues at a deeper level, we certainly want to encourage them to do that. Again, just quickly, you don't need to go to a lawyer to do these things, you don't have to spend money, you don't have to hire a lawyer to do these. Correct?
Jessica: That's right. For the advance directive, you do want to get it signed by two people. I believe and I'm embarrassed because I should know this, but I think you might need to get it notarized. Is that... Can you do though? I should know this.
Kim: I think it also depends on the state. I think in some instances you could just have a witness, but in some instance in some states, you do have to have it notarized. Again, a good tip for folks to take a look in your state. If you're putting together an advance directive, just check and double-check and see if you have to have that notarized.
Again, good tips for folks. You can expect more from us on this topic because we want to be helpful to folks and encourage these conversations. Dr. Zitter, I want to thank you so much for coming on the show today and talking about your new book. The book is called "Extreme Measures Finding a Better Path to End-of-Life". I really highly recommend that. Folks, check it out. It's a terrific book and we appreciate you sharing your thoughts, and insights, and recommendations about end-of-life care. It's been just a wonderful and very helpful conversation.
Again, I think maybe just the tip of the iceberg. Hopefully, Dr. Zitter you'll come back onto the show and we can talk more about these topics.
Kim: Well, that would be great. That would be great. It's been my pleasure to have our listeners join today for Frankly Speaking About Cancer. I'm Kim Thiboldeaux from the Cancer Support Community. I just also want to remind our listeners that at the Cancer Support Community, we have a whole host of free support services in person online, telephone support. We have 47 affiliate centers around the country where you can go for support groups, educational programs, nutrition, exercise, stress reduction. These services are free of charge to people with all cancers at all stage of their disease. For their family members and loved ones, you can also call our helpline. If you want to grab a pen, I'll give you that number. It's 888-7939-355. Again, 888-7939-355. You can call for support, for navigation services, resources. Give us a call, we're happy to help. Our website is www.cancersupportcommunity.org. I thank you all for listening today to Frankly Speaking About Cancer. I'm Kim Thiboldeaux. Until next time. Be well, do well, live well.
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