The Trump administration attempted to end the census count early but a judge has ruled against it. Diane talks about the twists and turns in the 2020 census with Andrew Whitby, author of "The Sum of the People: How the Census Has Shaped Nations, from the Ancient World to the Modern Age."
Most Americans say they want to die at home, but 75 percent die in hospitals or nursing homes. Hospitalization often means aggressive, high-cost treatment at the expense of quality of life. And life-prolonging care accounts for 30 percent of total Medicare spending. Now, two Harvard doctors are making movies that visually depict common forms of end-of life care in hospitals. The short films show real patients receiving treatment such as emergency CPR and feeding tubes. Clinical studies show that patients who view these movies overwhelmingly opt out of costly, life-prolonging treatment. Diane and her guests discuss how to make better end-of-life decisions.
- Angelo Volandes Physician and researcher at Harvard Medical School and Massachusetts General Hospital and co-Founder of the Advance Care Planning Decisions Foundation.
- Aretha Delight Davis Physician at Harvard Medical School and co-founder of Advance Care Planning Decisions Foundation.
- Naftali Bendavid Correspondent for The Wall Street Journal, currently based in Brussels.
MS. DIANE REHMThanks for joining us. I'm Diane Rehm. Most Americans say they want to die at home, but fewer than 10 percent ever talk with a doctor about end-of-life treatment. To help facilitate this important conversation, two Harvard doctors have started a foundation that makes and distributes short videos to doctors and hospitals. The films show common treatments for patients suffering from terminal illnesses. Drs. Angelo Volandes and Aretha Delight Davis join me to talk about how showing patients what life-prolonging care actually looks like can better inform the decision process.
MS. DIANE REHMI hope you'll join us. Questions, comments, 800-433-8850, send us your email to email@example.com, follow us on Facebook, or send us a tweet. Good morning to both of you.
DR. ANGELO VOLANDESGood morning, Diane.
DR. ARETHA DELIGHT DAVISGood morning, Diane.
REHMGood to have you both here. Some people have said that you two are the most subversive doctors in the medical system. Tell us why, Dr. Volandes.
VOLANDESTo the extent that we're forcing the health care system and doctors to slow down and have the conversation, then I think it's true. We are subversive, and we are disruptive. But I view it more as being an advocate -- an advocate for patients and families to have the knowledge with which to have the conversation, and it's not just us. There's a whole group of people in our society who are arguing this point.
VOLANDESYou have people like Diane Meier who go around the county tirelessly encouraging doctors to have this conversation, or people like Susan Toll (sp?), who are encouraging patients to have the conversation. But importantly you also have non-clinicians. People like Jonathan Rauch who are brave enough to share their story of their father to see how we get it so wrong in medicine. Perhaps all together, all of this disruption can help the health care system get it right.
REHMAnd that article that he's talking about appeared in The Atlantic by Jonathan Rauch. Dr Davis, speak of precisely what you mean by the conversation.
DAVISWell, Diane, the conversation is one of the most difficult, yet one of the most important discussions you will have in your lifetime. It is an opportunity for you as a patient, and your family, to have a frank and honest conversation with your health care providers about your diagnosis, about your prognosis, and about essentially where do we go from here? What do you want to accomplish with the time that you have left?
DAVISWhat concerns you? What scares you? What worries you about this part of the journey? What sort of interventions and treatments would you want and would you not want?
REHMAnd just who is supposed to be beginning this conversation, the doctor or the patient?
VOLANDESWell, for the greater part of the history of medicine, it has been the doctor. But the problem is that doctors may be good at it, or they might not be good at it, or they might not choose to have these conversations at all. What our videos do is empower patients and families with the knowledge and the questions to raise the conversation with their doctor, but also with their family.
REHMBut conversely you've said that there's a war on death in this country. Dr. Davis?
DAVISYes. I believe there's a war on death. As a physician, I am trained to do whatever is necessary to prolong your life. That is true irrespective of whether you are healthy as a patient, or if you're a patient with advanced disease. That's the guiding principle, and I will do that until and unless you tell me not too. Now, if you're a patient with and advanced disease, and you are informed about the risks and the benefits of these interventions, and that's how you would like for me to proceed, great. I have my marching orders. I know what I need to do.
DAVISBut if you aren't, and if you have not translated your values, your wishes, the core of who you are into some sort of medical plan, unfortunately what I will do is often times provide marginal benefit, cause great suffering to you and your family, and frankly, only postpone your death.
REHMSo Dr. Volandes, how did the idea of these videos come to you, and how did you proceed?
VOLANDESSure. The story behind the videos began about a decade ago this month in fact. I was a first-day intern in residency, and I was admitting to the hospital one of the University professors of English. She had widely metastatic cancer. So I did my history, I did my physical, and then I got to that point in the conversation that all doctors have a tough time with, talking about goals of care, CPR, breathing machines.
VOLANDESSo she looked at me and she said, Angelo, what would you do if you were in my shoes. What would I do? I was a first-day intern. Just yesterday I was a medical student, and today I'm Volandes. I had read and studied these things, goals of care, CPR, and breathing machines, but I didn't have much experience with it. So I told the professor, well, professor, I think it's important that we have a forest from the trees perspective, that we think about the risks and benefits for each of these interventions, but that we come to an understanding of where you are on your journey with this disease.
VOLANDESAnd then she gave me that blank look that probably all my patients gave me that first day of internship, and so I asked her naively, I said, professor would you mind taking a walk with me down to the intensive care unit so I can show you some of these things? Of course she obliged. We didn't walk down to the ICU, I put her in a wheelchair and rolled her down to the ICU where she got to see a breathing machine. She got to see a patient on a vent. The professor was able to get a sense of the place, to hear the beeps and buzzes, to see the colorful monitors, to feel the rhythm of the ICU.
VOLANDESWell, as fate would have it, I obviously didn't plan on this, but there was a code blue that was called in the ICU while we were there, and that's when a very nervous intern thought he was going to get fired on his first day on the job. So I took the professor out of the ICU, but not before she caught of few glimpses of CPR. When we went back to her room, she looked at me and she said, words, words, words. Angelo, I understood every single word that you said before, goals of care, CPR, comfort care. I am after all a professor of English. But I had no idea that's the sort of thing you were talking about.
REHMWhat it looked like.
VOLANDESSo during that week, I actually brought lots of my patients on their own personal tour around the hospital.
REHMHow did the other doctors feel about what you were doing?
VOLANDESWell, it was interesting because the nurses soon caught wind of what I was doing and...
REHMYeah. I'll bet.
VOLANDES...although they loved the educational value, they quickly put an end to my tour business. They didn't like me bringing patients all around the hospital.
VOLANDESAnd that's when I was left with this conundrum. How could we recreate these powerful and empowering experiences for both patients and families without having to replicate a tour? And that's when I came up with the idea of creating short films to better inform patients and families.
REHMHad you studied filmmaking previously?
VOLANDESYes. During medical school, I took a year off to study documentary filmmaking.
VOLANDESSo at -- I went to Yale Medical School where we were exposed to two of the greatest doctor/writers that were living, and so I was enamored with the idea of sharing patient stories and narrative, but from a young age my Godfather was an amateur filmmaker. I always envisioned myself not writing about these stories, but actually filming them. So it was quite to natural to meld my interest in film and in medicine.
REHMAnd how did you come into it, Dr. Davis?
DAVISWell, prior to entering the practice of medicine, I actually was an attorney. And, you know, Diane, sometimes there are events or series of events that force you take stock of your life, and for me that was father becoming very ill. And as he became ill, I started learning about his disease, and I was blessed to be able to glimpse into this very sacred space, and that was the space that he shared with his providers. And I was able to, and very much appreciated the fact that they didn't think of him as simply a patient with a disease, but they saw him in the larger context of his life, as a father, as a husband, and someone who had very strong views about how he wanted to spend the time that he had left.
DAVISMy father passed at home with the music -- his favorite hymns playing in the background. He was surrounded by us, and he died in peace, and I decided to make a switch from law to medicine because I really want to help inform and empower patients and their families during this last journey of their life.
REHMSo what you did, Dr. Volandes, was begin to make a series of films about people who have very, very serious illnesses, and then begin to be able to show those films to others with the same illness?
VOLANDESAbsolutely. So these videos are meant to help inform patients about their options and their families. What we often find is that doctors use complex language to start the conversation, and we live in a visually literate society. If a picture speaks a thousand words, videos speak hundreds of thousands of words, and the other think that the videos do is standardize the conversation so that regardless of who your physician is, whether or not they start the conversation or have conversation well, the patient and the family can have the information they need to make sure that they get the right care at the right time and on their terms, not what the doctor or the health care system thinks is right for them.
REHMAnd one of those videos is our website, drshow.org, as well as an article in The Atlantic written by Jonathan Rauch. When we come back, we'll talk further, and we'll talk with Nafatali Bendavid from Brussels.
REHMAnd welcome back. Dr. Angelo Volandes and Dr. Aretha Delight Davis, two physicians at Harvard University are with me. They, together, have created end-of-life videos, showing individuals in the last stages of their lives with various diseases. That first video you made, Dr. Volandes, was with a woman with Alzheimer's. Tell us about that.
VOLANDESYeah, it actually stemmed from my own clinical experience. We were having conversations with patients who were either in the early stages of dementia or elderly patients who are always encouraged to started the conversation with their doctors about if they had advanced dementia.
VOLANDESAnd what I noticed was, although I tried my best to use words to describe what the advanced stages of dementia where like, most patients simply didn't understand.
REHMThey couldn't imagine it.
VOLANDESAnd, you know, on television, most of the time when we see someone and they're quoted to have Alzheimer's disease, it's usually in the earliest stages. A Betty White-like figure who forgets the stove on or Ronald Reagan in the early stages of his battle with dementia. You know, when we're talking about advanced dementia, we're talking about people who cannot walk, cannot talk, cannot feed themselves. This that are really tough to try to imagine just using words.
REHMSo describe this film for us.
VOLANDESSo it was a short three-minute clip where we took a woman who was beautifully dressed, she was in a nursing home but she was interacting with her daughters. She wasn't able to walk, so we showed her what her normal day-to-day activities are. And what the viewer is able to do is instead of imagining what advanced dementia is based on a description using words, you actually get to see in real life what a person what the advanced stages look like.
VOLANDESAnd what I've heard from many, many physicians is that in the first 30 seconds of that short clip of a real patient with advanced dementia, the patient and the family are able to understand the disease better than if that physician took an hour to explain what the advanced stages look like.
REHMI have seen this video and several others that you created. And I found myself wondering because this particular Alzheimer's patient is being filmed by her daughters and she can no longer feed herself. It's painful. It's painful to watch. It's painful for the daughters who were trying to feed their mother and to ask her to try to chew, to try to close her mouth. And to digest the food. And I found myself wondering whether these films might indeed hasten a person to want to choose death over life.
VOLANDESIt's a great question. It has to do with the issue of coercion with these films. And I have three points for that. The first is, we work with the nationally recognized experts on this. They help us craft the videos and vet the videos to make sure that they're fair and impartial. The second thing that we do is we actually study these films in randomized clinical trials. So that particular film, we studied with 200 subjects over the age of 65.
VOLANDESAnd remarkably, when we asked that patient, are you comfortable watching the film? Ninety-five percent said they were comfortable. Did you find the video fair? Did you -- would you recommend that video to other patients making a similar decision? In all of our studies, over 90 percent of people would recommend the video to other people. That tells me our patients want this information and they deserve this information.
REHMAnd that person watching that video would have to have most of, if not all, his or her full faculties before watching that film in order to be able to make some kind of personal decision.
VOLANDESAbsolutely. But let me also push back a little bit because the premise to the question is that what we're doing today is less coercive than a vetted video. I would argue what we're doing today is more coercive, relying on the individual biases of physicians who are trying to have this conversation. I've overheard my colleagues use the following phrases: You want me to do everything, right?
VOLANDESOr another one that I commonly hear is: You don't want me to crack your ribs with CPR, do you? I find framing the questions by relying on words that individual physicians use to be more coercive than relying on a short film that has been vetted by both national experts but also by patients and families.
REHMSo will you show in other videos individuals being intubated, you show individuals receiving CPR, you show what else?
VOLANDESI should just make one small correction. It's actually a mannequin for the CPR video.
VOLANDESBut we show what it mean to have comfort-oriented measures. What does that mean? Unfortunately in our society, there are a lot of misperceptions about what comfort-oriented care is. But I think that speaks to the number problem in American medicine, the misalignment between the type of medical care patients want at the end of life. They want to die outside of the hospital, surrounded by their loved ones and not getting medical interventions.
VOLANDESAnd what research tells us is the facts. Most patients are still dying in our hospitals, receiving medical interventions that if they truly understood what is in involved, they would not want. Some people have called this costly care, futile care, even avoidable care. We're calling it unwanted care. When patients get medical interventions that they simply would not want, that's wrongful care. And unfortunately, patients and their families suffer as a result.
REHMDr. Davis, what was your role in the creation of these videos?
DAVISSo I served as the physician narrator in the videos. I introduced the videos and explain why the viewers watching them. I walk them through various options that they would have in terms of medical care towards the end-of-life and the risk and benefits of each of those choices. And then at the end of the videos, I strongly encourage them to take in consideration their wishes, their values and to have a conversation within themselves, one, but also with their family members and their physicians.
DAVISAnd I try to explain how incredibly important it is before they are able to speak for themselves to have that conversation and to make their wishes known to those who's around them.
REHMAnd joining us now from Brussels, Belgium is Naftali Bendavid of the Wall Street Journal. He's written an article about two individuals, twin brothers who were deaf and beginning to lose their eyesight. Good morning to you, Naftali.
MR. NAFTALI BENDAVIDGood morning, thanks for having me on.
REHMAnd good to hear your voice again. Tell me how you came across this story.
BENDAVIDWell, here in Belgium, they have euthanasia and I think it's part of this broad end-of-life discussion that's really probably a global discussion. That's part of what the doctors were talking about. But it's unusual here in Belgium as well as the Netherlands and Luxemburg in that if you have an incurable condition and what's considered intolerable suffering, you can request that a doctor apply a lethal dose of medicine essentially, essentially put you to death.
BENDAVIDIt's not the kind of thing that appears to be in the horizon anytime soon in the United States, at least not in a formal way. But it's something that's pretty widely accepted here and it was fascinating to me that, you know, two societies -- American and European or at least this part of Europe -- view these things so differently. So these twins, you know, they were about 45 years old.
BENDAVIDThey did not have a terminal condition. They did have various medical problems. They were, as you say, deaf and becoming blind, which meant that they'd have great difficulty communicating with each other or with anyone else because they wouldn't be able to use sign language in the same way. And they were starting to feel so isolated and so fearful of losing their independence that they requested euthanasia.
BENDAVIDAnd here you have to find two or three doctors to essentially sign off on the request and they did. And last December in a hospital in Brussels, lying side by side on two adjoining beds, they received lethal injections.
REHMAnd what about family members? Had they talked? I know their parents were elderly. They were becoming frail and certainly at first did not agree with the twins' decision.
BENDAVIDNo. They were very much against it. I was not able to talk to the parents because they are frail and elderly and have their own issues. But my understanding is that they were very much against it. In the end, they accepted it perhaps because they had no choice. From talking to people who have talked to them, I'm not sure they were ever particularly happy about the decision or reconciled to it in a deeper way.
BENDAVIDBut, you know, it's up to the patients here. And these guys, Marc and Eddy Verbessem were their names, had made this decision and it was their call under the law. And so the parents ended up, I think, wanting to be supportive came to the hospital with them and were near them at the time. But obviously this is a very difficult thing for people who are close to them.
REHMI have one last question for you, Naftali. What about young children? Suppose there are young children with really serious terminal illnesses, how is that handled in Belgium? And how do parents enter into that?
BENDAVIDWell, that is an area of the law that they're talking about expanding here. There's a bill in the Belgian Senate that would expand euthanasia to minors. Currently, a minor cannot be euthanized. But under this proposal, the parents would have to agree. But if there was a minor with serious illness, terminal illness, intolerable suffering who is found to have what they call capacity for discernment, that is they had to have a certain amount of maturity and ability to understand what they were asking for, then they too can request to be euthanized in order to end terrible suffering.
BENDAVIDIt's not clear if this will become law, but it's something that is very seriously being discussed right now. So, again, in the U.S., you know, there's only maybe four states that have assisted suicide, which is where the patient administers it himself. Here they have euthanasia and they're talking about expanding it. So it's two very different approaches.
REHMNaftali Bendavid of the Wall Street Journal. His article about these twins in Belgium and that country's process regarding euthanasia is also at our website. You can read that at wamu.org/drshow. And Naftali, thank you for joining us. Thank you for your work.
BENDAVIDGreat to talk to you again.
REHMThank you. And you're listening to "The Diane Rehm Show." And that, Dr. Volandes, would be something, you heard Naftali say that in this country I think there are three or four states that do allow assisted -- assistance in dying. Is this something you are neutral about or are you in favor of? And I would ask the same thing of you, Dr. Davis.
VOLANDESSure. So euthanasia is an extremely complex issue that other people have spoken and written about. I want to be quite unambiguous here in that what we're talking about is completely different. It's apples and oranges. Apples and watermelons. What we're talking about is making sure patients are empowered, their families are empowered to get the right care at the right time but on their terms.
VOLANDESAll Americans, all of us will either live and die in our health care system. We just want to make sure the care that you want is the care that you get. I'm asking also, however, about your feelings regarding doctor or a physician-assisted suicide.
VOLANDESSure. My personal feelings, and I studied this actually quite a bit is I still remain neutral. America is a varied place looking at some of the other places that have adopted this. I still think we need a little bit more in terms of data. I'm a data kind of guy.
REHMAnd Dr. Davis?
DAVISI agree completely with Dr. Volandes. I'm incredibly value neutral on this issue. I think it's important for us to have this conversation. I think it's important for us as a society to have a conversation about our views about death and dying and what sort of care folks or patients are interested in at the end of life.
REHMDo you think more and more people are having these kinds of conversations?
VOLANDESAbsolutely. You know, talking about death and dying is something that we've been doing for millennia. I mean, it goes all the way back to Socrates and Plato. This was commonly spoken about. And philosophically understanding the role of death and life can either be a fountain head of anxiety or it could be a source of liberation. What's happened in American health care over the last 50 years is that death has been hidden. It's been hidden in our hospitals.
VOLANDESAnd it's only now over the last few years that death is coming out of the hospital where we're talking about it, where we have in these cafes where we're openly discussing it. But the real problem -- and here's where I think the videos are helpful is -- the real problem is we're not translating those conversations into actionable medical plans.
REHMYou know, I found it fascinating to watch the videos and to realize how calm they are, how emotionless they are because that sort of lends them that much more weight.
VOLANDESYeah. Jonathan Rouch (sp?) refer to them as banal. I'm not sure I enjoyed that word to describe my work. But I think it's a compliment actually for these videos. These videos are a tool to help you get knowledge. We don't use actors. We don't use special effects. We use real doctors, real patients. You know, there's no mood music. And this is not your blockbuster at the local Cineplex meant to entertain you.
REHMAnd what is your goal? Is it to get these videos into the hands of every hospital, Dr. Davis?
DAVISYes. Our goal is nothing short of a paradigm shift that is sustainable. By that I mean a radical reengineering of how doctors and health care providers communicate with patients. I think the videos are an important step in that direction. But they're not a solution onto themselves. They're part of a solution. This is not a technical problem. This is a multi-factorial problem. And consequently, various people need to come to the table.
REHMAll right. We will take a short break here. When we come back, we'll open the phones, get your reactions. Stay with us.
REHMAnd welcome back. Two doctors are with me. They've been working on a very interesting and unusual product. Dr. Angelo Volandes and Dr. Aretha Delight Davis. They're both at the Harvard University Medical School. Dr. Volandes also practices at Mass General. He's co-president, co-founder and president of Advanced Care Planning Decision Foundation and he shares that honor with Dr. Davis.
REHMBefore we proceed, let's hear a portion of one of the videos that has been done this one in regard to...
DAVISI'd like to talk to you about decisions you might have to make while hospitalized. I would like to ask you about what kinds of treatments you might want in the hospital. This video might help you imagine what your choices might be. You might find it difficult to discuss this. But as it turns out, different people have different ideas about what is best for them. It's a good idea to think now about what you would want if you become very sick in the hospital.
DAVISAnd important decision you will need to make is what your doctor should do if your heart would have stopped beating. One option is to attempt cardiopulmonary resuscitation better known as CPR. CPR tries to get your heart to beat again if it stops. This means pressing on your chest and using an electric shock to attempt to restart your heart. Frequently, CPR does not work.
DAVISIf you want CPR attempted, you would also agree to have a ventilator or breathing machine if you need it to keep breathing. This involves putting a tube down your throat into your lungs and connecting you to a machine that pushes air into your lungs. You cannot eat or talk while on this machine. If you are on a ventilator, you would likely need very strong medicines. These are usually given in the intensive care unit or ICU.
DAVISIf you have a disease, CPR will not cure your disease and in most patients with an advanced disease, CPR does not return you to your previous state of health.
REHMAnd you now heard a portion of the audio, but of course the video demonstrates exactly what's happening. Several emails we've received about where you can find the videos on our site. Go to drshow.org then scroll down to related links where you'll find the link to the Decisions website. That's the ACP Decisions website. All right. we're going to open the phones now. First to Cleveland, Ohio. Good morning, Clark. You're on the air.
CLARKGood morning, Diane. Thanks for taking my call.
CLARKI congratulate these doctors on their efforts. Um, I am a board member of the Hospice of the Western Reserve, which is the largest -- excuse me -- nonprofit hospice in northeastern Ohio. And I just wanted to emphasize again what Dr. Volandes said about distinguishing between end-of-life care and euthanasia or assisted suicide.
CLARKWe, in hospice, maintain that assisted suicide is not necessary if you have good hospice care because it can take care of most Americans' worst fears about dying, that is to die alone, to die in pain and to die hooked up to a lot of tubes in the hospital. So I just wanted to make that point.
REHMI'm glad you did. Dr. Volandes.
VOLANDESIt's a great point and I just want to be sure that people don't conflate the two. But it's also important to remember that for some reason in our society, people think of hospice or palliative care, and they use it interchangeably as if it's only about end of life. I tell people, no. It's about good quality life. It's about respecting your choices in making sure you get the right care according to your beliefs.
REHMAnd here's a Tweet from Jan who says, "Medical people are really not willing to call it quits. My husband had a massive heart attack. It took continual assertions to end support. Finally I had peace.
VOLANDESI agree, but there's hope out there. Today there are 50 health care systems, hospitals and clinics across the country that use our video library, including some of the biggest players in American medicine, .like Kaiser Permanente. And then leading innovators like Group Health and the Everett Clinic. Our most ambitious project is a statewide implementation of our videos across the entire state of Hawaii, 1.4 million residents over the course of the next three years.
REHMTo Deale, Md. Good morning, Jan.
JANUm, Dr. Volandes' comment about getting the right care at the right time really strikes a chord with me. In fact, I'm going to give you sort of a textbook case of what the previous Tweet person, whose name also seemed to be Jan, said. My dad died several years ago from metastatic prostate cancer. The difficulty we had with it, his oncologist wouldn't or couldn't tell us, you know, whether the cancer had metastasized after each scan or X-ray. But we knew what was going on. I mean, he was extraordinarily tired. He was in significant pain in his chest, and it wasn't just a pulled muscle.
JANFinally it took his good old primary care doc, after about six months of back and forth with the oncologist, for her to tell us that it was time to call hospice. And I still remember, you know, that moment in the office. We looked at each other, my dad and I, with great pain but also with a combination of that paint and relief. He finally had hospice care with us and about two months later he died. But I think that if I'd had this film or education about end-of-life procedures, it would've made it easier for me to start the conversation with the oncologist saying, you know, we know what's happening and you may not be able to verify it. We absolve you of any responsibility, but let's start talking about this.
VOLANDESAnd those are the stories that we're hearing about in our own statewide implementation of in Hawaii where patients are being shown the videos. We had a patient that whose family just saw the video. They were admitting their mom with dementia to one of the nursing homes. And the family stopped and said, wow, this is the first time anybody's asked us that we actually have a choice in the matter. Or a patient that was seen at a hospital where the elderly patient said, no one has ever stopped and asked me what I want. I didn't know that I had a choice in the matter.
REHMHere is a posting on our website from Earnest who said, "Your guests deserve praise for their efforts, however I'm very pessimistic. Many Americans, when told, say that they're all for a natural death and claim they don't want feudal heroic measures. Yet ask any hospice or palliative care physician what his or her experience is, and the answer is that in practice the majority of patients insist that everything be done. Prudent medical judgment is overshadowed by the patient's autonomy." Dr. Davis.
DAVISI think that's an excellent point that he raises there. I'm hopeful though. I truly am. I think patients -- and the research shows -- not only our research but the research of others shows, that when patients are informed, when they know about risks, when they learn about the marginal benefits of many of these interventions that we administer routinely for patients towards the end of life, that they opt that that's not what they want.
DAVISSo I am hopeful. But let's be realistic. Hope is not a plan. This is a multi-factorial problem. And our video in themselves are not going to change or are not in themselves a solution. What we really need is behavior change. We need for the stakeholders who are involved in this problem to come together and to talk. It's not just doctors who need to change their behavior. It's not just insurance companies that need to change their behavior. All of us need to do so.
REHMAnd let's go to Oakton, Va. Good morning, Laura.
LAURAGood morning. Thank you for doing this really important show. I'm calling mostly to express my gratitude to the doctors for making these videos. And I look forward to watching them online. Both of my parents are deceased. My dad died after 30 days in ICU. That was a very painful education. And after that my mom opted -- when she found out that she was sick, she opted just to die at home just with hospice care.
LAURAI think as a society we just all need to grow up and consider death, you know, as a certainty and to have a plan, like I know this is what you're advocating. After going through my parents' deaths, I do have a plan. I'm healthy, I'm middle aged. My kids who are both minors, they know that I have a plan. They don't know of it, the details. My extended family, my designated health care power of attorney, you know, they all know about this. And I think that we just kind of have to grow up and make that plan.
VOLANDESAnd I think that sounds wonderful. But I just want to remind everybody that the videos are not a proxy for the conversation. It is not meant to replace the doctor/patient conversation. It's meant to reinforce it.
REHMHere's an email from Amy who says, "How do you address or avoid a responsive emotional pain and hopelessness among patients and family members viewing these videos?
VOLANDESIt's a wonderful question and one that we struggle with a lot. But I think we have to all acknowledge that visual images can be coercive. But we do our due diligence by being very careful in the images. Things like the film angle that we use, a zoomed up shot versus a wide angle. We have a whole series of criteria that we try to use, but we also listen to patients. We listen to family members. We hear their thoughts on the images that they're seeing.
VOLANDESEach video takes a year or two to create and it's quite expensive. But we feel very strongly that we need to do it right. So often in medicine, there are ideas that sound good in theory but don't pan out in practice. That's why we study our videos across the country.
REHMHere's an email from Terri in Indiana who says, "I've worked as an RN in a large hospital for 25 years. I think most patients and especially families of those patients who are suffering from major illness have unrealistic expectations of what health care can do to save a patient's life or extend a patient's life. Dr. Volandes.
VOLANDESThis is a common problem. I can't tell you how often I ask patients, what do you think the chances are of actually having a good outcome if we attempted CPR, let's say for a patient with advanced cancer? I routinely hear all the time, the truth is, it's far fewer than that. And so one thing that we as clinicians have to battle with is the media. When people are watching the latest episode of "ER" or "Grey's Anatomy," everybody survives CPR and everybody looks like George Clooney on a breathing machine. Well, the reality is that that's not what real expectations are for these interventions.
REHMAnd you're listening to "The Diane Rehm Show. To St. Louis, Mo. and to, let's see, Robert. Good morning to you.
ROBERTGood morning, Diane. Thank you for taking my call.
ROBERTI have not seen or heard the videos at this point. I lost my wife five-and-a-half years ago to cancer.
REHMOh, I'm sorry.
ROBERTShe was treated -- I am too, believe me. She was treated at Dartmouth Medical Center in Hanover, N.H. Excellent care, excellent hospital, where I believe they invented palliative care, if I'm not mistaken. The palliative care people there helped manage her pain during her chemo. And she eventually went into this position where she needed to go into hospice. We put her in hospice. They turned my living room into a hospital room essentially, with all this equipment and a bed and everything.
ROBERTAnd that was fine except the reason she was there was not the doctor's decision or my decision or my wife's decision. It was the insurance company's decision because they basically told me on the phone, if you don't put her in hospice we're going to drop your coverage. And that was after 40 years of paying them and not having one claim against the insurance company.
ROBERTBut having said that, during her time in the hospice she was choking one night and I used that vacuum machine to get her throat clear. And she started breathing okay then and slept the rest of the evening. Well, the next morning, the nurse showed up and just absolutely reamed me for using that piece of equipment that was all wrapped in plastic and everything was nice and sterile. And she said to me quote, "you're going to have to pay for that equipment now and it won't be covered by your insurance."
ROBERTThen she said to me, well, we don't do anything for the people in hospice except give them drugs because we want them to be comfortable. And I thought, wow, that's interesting.
VOLANDESI'm very sorry to hear about your wife and that experience.
REHMI should say.
VOLANDESBut I just want to state two facts about hospice. I think writing to your insurance company, sending letters to your government representatives is important because hospice should be a right of every American. But I think more importantly is looking at the science that there are studies now that show that actually survival when patients are on hospice is actually may be the same or longer than going to a hospital and getting typical medical care. I'm sorry to hear about your experience with hospice, but as I mentioned before, my hospice colleagues are all about life and good quality of life.
REHMSo how widely distributed have these videos become thus far?
VOLANDESSo far, 50 hospitals, health care systems and clinics, but our biggest project is a statewide implementation in Hawaii.
VOLANDESYou know, it's a very interesting story. When Aretha and I started making these videos, we were really focused on the doctor/patient relationship. Then we thought about the hospitals. But then these three visionaries from the Hawaii Medical Service Association, Hilton Raethel, Ray Sides and Robert Eubanks approached us with an ambitious and bulk proposition to have 14 hospitals, 600 physicians and 50 skilled nursing facilities use our videos. It's an ambitious project.
REHMDr. Angelo Volandes, Dr. Aretha Delight Davis. They're both at Harvard Medical School, each co-founders of the Advanced Care Planning Decision Foundation. You can see a video at our website drshow.org. Thank you and thanks for listening. I'm Diane Rehm.
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