 On behalf of the McLean Center for Clinical Medical Ethics, I welcome you to today's lecture in our seminar series on ethical issues and end-of-life care. Next Wednesday, on April 15, Professor Joan Tino from Brown University will present a talk entitled, Persons with Dementia, Are They the Canary in the Coal Mine? It is now my pleasure to introduce today's speaker, Dr. Diane Meyer. Dr. Meyer is Director of the Center to Advance Palliative Care, a national organization devoted to increasing the number and quality of palliative care programs in the United States. The Center to Advance Palliative Care provides hospitals, health systems, hospices, payers, and other health care organizations with the tools, training, technical assistance, and metrics needed to successfully implement palliative care. In part, through Diane's leadership and guidance, the number of palliative care programs in US hospitals has more than tripled in the past 10 years. At the Icon School of Medicine at Mount Sinai in New York, Dr. Meyer serves as Professor of Geriatrics and Palliative Medicine as the Catherine Gaysman Professor of Medical Ethics and as the founder of the Hertzberg Palliative Care Institute. Dr. Meyer grew up in Hyde Park and is a graduate of the lab school. She received her M.D. from Northwestern University and completed a residency in fellowship at Oregon Health Sciences University. Dr. Meyer's major interests include medical decision making in end-of-life care, promotion of palliative care practices, and improving medical education in pain management and patient care for patients with serious and life-threatening illnesses. Dr. Meyer has published more than 200 peer-reviewed articles in several books. Her most recent book is entitled Palliative Care, Transforming the Care of Serious Illness. Dr. Meyer also served as editor of the first textbook on geriatric palliative care, as well as serving as one of the editors of the four editions of Geriatrics Medicine, the standard textbook in the field of geriatrics. Today, Dr. Meyer will give a talk entitled, as you see behind me, Improving Quality Reduces Costs, Ethical Aspects of Care for the Seriously Ill. Please join me in giving a warm welcome to Diane Meyer. It's very nice to be home. I took the same walk from my hotel that I used to take from home to walk up to the lab school. Mixed memories. So I'll be talking about palliative care as a sort of applied ethics. And it'll be interesting to see if you can identify the various ethical principles at play in what I'm about to present to you. So I have no conflicts of interest to report. What I'll be talking about today is the case, the data case, evidence case, for integrated palliative care strategies. And by integrated, I mean at the same time as all other appropriate medical treatment, not limited to brink of death care. But throughout the course of disease. Now, review with you some of the data on what we know works to improve the value equation. That is quality of the numerator and cost in the denominator for vulnerable, complex patients. And then what we need to do to sort of get over our taxonomy silos in medicine, department of medicine, department of pediatrics, department of surgery, nursing versus medicine versus social work, hospitals versus home care versus nursing homes. We're very caught in our defining silos and it gets in the way of what patients need. Last night at dinner, one of our colleagues mentioned that it's funny that there are hospitalists and there are sniffists and there are amulists. But there are no patientists. Thank you for that brilliant insight because I think it is actually quite profound. So this is basically to make the point that spending is highly concentrated on the care of the sick. And what this shows from the medical expenditure panel survey from 2012 is the fraction of spending accounted for by the top 1% of the sickest, most complicated patients in the US health system. And the top 1% account for about a quarter of all US health care spending. The top 5% account for half of all US health care spending. So let's just pretend for a minute that you're a policymaker and you're looking to improve value and get a handle on sustainability of the health care system. Who would you focus on? What patient population? The sickest and the most complicated and the costliest. So the reason palliative care has become the most popular girl at the prom in many ways in the US health care system is precisely because of its impact on that costliest, sickest 1% to 5% of patients and the accumulation of data showing the effectiveness of palliative care and improving quality and reducing cost in that group. And just so you get a sense of how staggering the variation is in health care spending in these different groups, the top 1% are about $100,000 per person per year. And the top 5%, about 43,000 per person per year. Whereas the bottom 50%, all the way on the left, $234 per person per year. There isn't a whole lot you're going to do to reduce spending in that group. It's pretty low. Just as I imagine most of the people in this room do not cost the health system very much because you're healthy enough to be here. So I didn't know about the value equation. I had never heard of it, I'm embarrassed to say, as a full-time faculty member for decades in an academic medical center until I went to Washington, DC to do a fellowship in health policy in 2011. And this is all anybody in Washington talks about is the value equation. And it's really not complicated. It's quality in the numerator and cost in the denominator. So what's an example of a very high value intervention, one that markedly improves quality of the costs very little or nothing? Vaccines. Handwashing. Actually, clean drinking water is probably the best example. The leap upwards in life expectancy between 1900 and today, over 30 years, occurred before the era of antibiotics. Actually, most of the gain occurred before 1940. And it was because of the recognition of the germ theory of disease. And realizing that drinking water should not be downstream from sewage. Antibiotics added another few years to that gain. And modern medicine, as we practice it in this building, a trivial amount to the gain in human life expectancy in the last century. So while we're at it, what's an example of a very low value intervention, something that doesn't help people or may actually harm them at enormous per person cost? Where to begin? So the ICU, I don't know about here, but at my place, is filled with people with severe advanced cognitive impairment on ventilators, on dialysis, on pressers. Clearly not going to benefit them, because it's not going to restore them to health. Very frightening, physically stressful experience for patients at a cost of incalculable cost in taxpayer dollars every day. So the take home point is that because of the concentration of risk and spending, and the impact of palliative care on quality and cost and precisely this patient population, its principles and practices are central to improving value for the US health care system. And here's an actual patient of mine. Initials changed, but this is actually a real photo of Mr. and Mrs. B. They gave me permission to tell their story and to use this photo. And you can see that Mrs. B. is quite a character. She sews all her own clothes. And she always sews a matching tie. And this is their 60th wedding anniversary photo. So I met Mr. B. in Mount Sinai's emergency department about 2 and 1 half years ago when I was attending on the palliative care service and carrying the beeper, because it was after 5 o'clock and a lot of people had gone home. And I got a call from the attending and the emergency department. He said, Diane, I don't know if it's appropriate to call you about this patient, because he's not dying, wanting to shoot myself that one of my own colleagues still thinks palliative care is only appropriate for the dying. But maybe you can help. This couple is abusing the emergency room for low back pain. That was the quote, abusing the emergency room for low back pain. So it turns out he was, at the time, 88. He had moderate dementia. He was OK as long as he was with his wife and at home. But if he was alone, he would get lost and agitated. And he was getting increasingly agitated because of this progressively severe spinal stenosis and low back pain that he had. When we met him, he described the pain as an 8 out of a possible 10. And he was taking very dangerous doses of acetaminophen. He was taking, popping two extra strength Tylenol whenever he felt like it. It was a miracle that his liver was still intact, given the amount of Tylenol he was taking, with no benefit, I might add. So it turned out that the reason my colleagues said this patient was abusing the ED is that this was his fourth ED visit in a two month period. Two months, four ED visits. The three prior visits, two had been for severe low back pain and one had been for agitated delirium that turned out to be due to a fecal impaction. Why was he using the emergency department to manage the symptom distress? Or why was his wife using the emergency department to manage the symptom distress? Very good, Dan. So this is what Mr. V said, don't get me out of here. He was absolutely furious at his wife for schlepping him back to the ED. Here's what she said. He hates being in the hospital, but what could I do? The pain was terrible and I couldn't reach the doctor. So what actually happened is he went to the bathroom after dinner, sat down on the toilet and could not stand up because of back spasm. He just couldn't move and she was trying to pull him up and she couldn't. She wasn't strong enough and he was refusing her help. There was no doorman, their only daughter lives in California and she's the one who emailed me the photo but she's not around and there were no neighbors. And so she called her doctor's office and what do you think she got? It was 6 p.m. on a Thursday night. What she get? What the answering service said was actually a tape. What did it say? The tape said if this is a medical emergency, hang up now and call 911. And we blame the patient for abusing the emergency room. System is perfectly designed to get the results that it gets. So she couldn't reach the doctor. The doctor's tape said call 911. So she said, so I called the ambulance. It was the only thing I could do and in fact it was the only thing she could do. So what happened was here's what he got before we met him that Thursday evening. Four 911 calls, four ND visits, three hospitalizations. And of course when he was in the ED this was two and a half years ago before they prohibited putting fully catheters in old people in the ED. Of course every time he was in the ED he got fully placed to make things easier so they didn't have to walk him to the bathroom. So he got a hospital acquired catheter associated UTI with all the associated complications of broad spectrum antibiotics in an old person in the hospital. Marked functional and cognitive decline including delirium during the hospital stay. Enormous stress on the part of his wife. So we met him and here's what we did. First we listened to the story of what had happened over the past few months and reviewed the records. He could not take anti-inflammatory drugs like ibuprofen because his creatinine is about two and he had a past history of a GI blade. So they're harmed to him the risk of NSAIDs far outweighed any benefit. So we started him on a tiny dose of oral liquid concentrated morphine, 2.5 milligrams and we just watched him to see how he tolerated it. Did he get more confused? Did he pass out? Did it help his pain? And actually perhaps because he was very old and opioid naive 2.5 milligrams did take the edge off his pain. You could actually see his face relax, the grimacing in his forehead and his face. As we were watching him to see what the impact of this medicine would be, we used our time well to do a lot of work with Mrs. V about how to prevent constipation and how to administer safely this drug. So I sent the medical student who was still with me across the street to the pharmacy to get the prescription for the concentrated liquid morphine to pick up MiraLax, which is a laxative that causes less cramping than some of the other things we typically use and to get some Dolgalax suppositories. I don't know how many of you have ever tried to open a Dolgalax suppository. It's almost impossible. So we had her practice mixing up one scoop of MiraLax in water and stirring it up and making sure that she understood she was to give him that twice a day, showing her how to use a scissors to make a vertical cut in the Dolgalax suppository so she could peel the foil away and how to use that if he failed to have a bowel movement. She was to use that after breakfast. And then we showed her using a syringe how to pull up a quarter of an ML, which was the amount, actually it was an eighth of an ML, the amount she needed to give him 2.5 and they watched her do it over and over until it was clear that she knew what she was doing and could see the marker on the syringe, which we marked with a black sharpie. And then did something called Talk Back, which is after she had shown us she knew how to do this we asked her to tell us back what we had said to her about how to use these things until she got it right. Because even though she's a very intelligent woman and seemed to be hearing us, it took a fair amount of repetition to be sure that she got what she had to do. So at 10 o'clock we put them in a taxi and send them home with those medicines. And what I did in addition to that is call my colleague who runs our house calls program which is called Visiting Docs. It's visiting nurses, nurse practitioners, social workers, med students, residents and docs, but it's called Visiting Docs. And get him to the top of their list because he was a palliative care patient. They always put palliative care patients at the top of the waiting list. And they went to see him, perhaps this is because it was me that called, but they did go to see him the next morning to make sure that things were safe since we had started him on an opioid. And what they found was a disaster waiting to happen. Loose throw rugs all over the place, electrical wires across the place. The only food in the refrigerator was Chinese, old Chinese food. She couldn't go grocery shopping because he couldn't come with because of the back pain and she was afraid to leave him alone. So she didn't know anything about ordering food online. I don't even think they had a computer in the house. So she was just using the local Chinese place. That's what they were eating. There was some cereal. That was all that was in the house. So there were no grab bars in the bathroom, no elevated toilet seat, nothing. Now this patient had a primary care physician who he wasn't seeing much because he couldn't get to the office. But that primary care physician never once visited him at home to see why all these disasters were happening over and over. So the visiting docs brought in PT and OT, certified home health agency. They put in all the grab bars. They safety proofed the house. They spoke to the daughter on the phone and got her to order from Fresh Direct so there's groceries delivered once a week to the house. And they arranged meals on wheels. And then the most important thing that we did, I think, was ask them if they were members of a faith community. And it turns out they had been very, very active members of the local church. They live on 92nd in York and their church was maybe three blocks away. Again, could not get there because Mr. Beek just couldn't make it. Three block walk, he couldn't do it. And for reasons I don't understand, nobody from the church reached out to them. But with their permission, we called the pastor and surprise surprise, they had a friendly visitor program that was made up of congregants as well as high school students doing community service. So since we met him three afternoons a week from 3.30 to 5.30, either a high school student or a member of the congregation come to the house to be with Mr. Beek and let Mrs. Beek out. To be with her friends, to get her hair done, to go for a walk, to go shopping. Of all the things we did, I think that was the most important, the social support for both of them. And the other thing that church did is arrange transportation to pick them up every Sunday and bring them home after church every Sunday. So I think the social support is probably the fundamental reason that they're doing so well but all of these efforts together have resulted in Mr. Beek is now 90 and a half and Mrs. Beek is 85 and they're still living at home. House calls referral, pain management, 24 seven phone coverage, support for caregiver, meals on wheels, friendly visitor program. He has not once been back to the ED or the hospital. Now you tell me which column is higher quality? Which column is lower cost? This is the problem right here. What happened to Mr. Beek is the problem with the modern healthcare system and why we are throwing fistfuls of money out the window every day because the system is not designed to meet the needs of the people it serves. So is Mr. Beek's experience atypical? Unfortunately it is not. These are data representative Medicare data from health affairs in 2012 finding that three quarters of Medicare beneficiaries are in an ED at least once in their last six months of life. So in fact the ED is the modern death ritual in the United States. It's almost impossible to get off the planet without first or more than once going through an ED. There was a great New Yorker cartoon that I made to find and make into a slide of an emergency department and in the doorway was an MRI machine like you can't get in until you get your MRI. So costly imaging and emergency department care is the standard of practice for chronically and seriously ill people. So I'm gonna ask you a quiz question here. Remember I told you that the cost, the sickest 5% of people in the United States account for 50% of all spending, right? I want you to tell me what fraction of that 5% you think are in their last 12 months of life? Not last six months, less 12 months of life. And those of you who know the answer cannot answer. We talked about this at dinner last night. You may just guess, throw out a guess. 95%. Any other guesses? 75%. That's where most people come in and if you just read the newspapers which talk over and over about how much money we waste on care of the dying you could be forgiven for believing that all this money is spent on people who are dying and that it's all waste. But it's only 11% of the cost, at least 5% who are in the last 12 months of life. And these data are published in the recent Institute of Medicine report called Dying in America. This is appendix E and you can download it free online from the IOM. So who are the rest of the 5% then? If only one out of 10 is in the last 12 months of life, who are the other costly patients? So half, 49%, have one time high spending, get better and regress back down to the mean. So somebody who gets kidney transplant or an aortic valve replacement or radiation treatment for cancer. Very, very expensive, but not persistently expensive. So the following year they drop back down. Now these are people arguably that you could say are actually benefiting from expensive medical interventions because they don't continue to require it year after year. Clearly we could be more efficient in that 49%. There's a tremendous amount of waste, you know even at the best hospitals like this one. So we could reduce that. But I don't think anyone would argue that this is appropriate spending in that these people are benefiting from, as in the story that Mark told last night, dialysis for example. But the remaining 40% of the 5% are people with persistent high spending year after year after year. And who are they? They are not dying. They are not hospice eligible. Who are they? Think about Mr. B because that's who they are. They have functional impairment. Why is that so important as a driver of utilization? What is it about being functionally dependent on another person that drives a lot of healthcare utilization? Caregiver exhaustion. The person who calls 911 is the caregiver. Same for frailty because people who are frail need help to get through the day. Same for dementia. The burden on family caregivers is incalculably high. And the only resource we provide them is 911. So they use it. Exhausted, overwhelmed family caregivers. Social and behavioral challenges like not being able to afford transportation to get to the doctor's office, not speaking English and not understanding what's written on the pill bottle, food insecurity, having to choose between paying for transportation on meds and food, unsafe housing, family violence, violent communities, those are major drivers of the costliest 5% that group that has persistent high cost year after year. And some of them also have a serious illness. But the serious illness is almost the afterthought. The serious illness is what leads to the functional limitation, the frailty, the dementia. But serious illness in and of itself is not a good predictor. It's the conditions associated with the serious illness that are good predictors of utilization. Now let me ask you, I don't know about you. Are you guys on EPIC in the hospital here? Are you required to put in functional status and cognitive status before you close the chart? Neither are we. Are you required to say if the person has a family caregiver that's under stress? Neither are we. Yet you are required to try to identify the high risk high cost patients and keep them from coming back to the hospital every other second. And yet we're not measuring the key predictors. This is a simple fix that I keep telling Medicare they should require with bill submission because everybody needs to be able to identify preemptively who this population is rather than waiting as with Mr. B till he had four ED visits and the only reason that palliative care was ever called, he'd be dead by now if that ED attending had not called us. That ED attending happened to be a medical student at Mount Sinai years before and had rotated with us on palliative care. So it's pure coincidence that we got called. It wasn't a standardized approach to quality for high risk people, it was random. That's not fair to all the other Mr. Bs coming to the ED. So here's a study from Northern Spain. This is data. Northern Spain, everyone has a primary care doc. Every primary care doc knows who's on their panel and every primary care doc has an electronic health record which is interoperable with the rest of the system. They're a lot poorer than we are but they seem to be able to do these very simple things. They were asked to identify everybody in their panel whom they would not be surprised if they died in the next year or two. The surprise question turns out to be a fairly accurate predictor of prognosis. So you can see here that 55% of the people they wouldn't be surprised about, the majority were demented and frail. Whereas what we might have guessed, cancer, 12.7%. Heart failure, 10.5%. And stage COPD, 6.4%. Now it's very probable that some of the dementia frailty people had some of those serious illnesses as well but what these primary care docs guessed were gonna be the highest risk for death in the next year or two, wasn't the serious illnesses. It was the functional impact of the serious illness and the cognitive impact. So these are data from Medicare looking at the costliest 5% of Medicare beneficiaries or in the Medicare current beneficiary survey that found that the top 5% of Medicare spenders, 61%, are functionally impaired. And these are data from my geriatrics colleagues at the University of Indiana published in JAGS a few years ago that compared utilization among Medicare beneficiaries with and without dementia who are otherwise comparable. So adjusted for the concurrence of other serious diseases. And you can see here that those with dementia had four times as much skilled nursing facility use, 20 times more Medicaid funded nursing home use, 50% more hospital use, twice as much certified home health agency use and three times as many burdensome transitions. That's where the money's going. What is it about dementia that drives all this utilization? The caregiver, not the patient. Not the patient's benefiting from all this. It's the only way for the exhausted family caregiver to get any kind of break. So why? Why is it that in the U.S., the only thing you can get is a 911 caller hospitalization when you need help. This is not the sole reason, but this is one of the reasons. And that is that the ratio of social to healthcare spending in the U.S. is among the lowest in the world. You can see the high bars, Poland, UK, Finland, Denmark, Belgium, Sweden, they spent about between $2 and $2.50 on social supports for every dollar they spend on medical care, per se. That's us. We spend 70 cents on social supports for every dollar we spend on medical care. So I'll tell you about my visit to Dame Cicely's funders before she died. I went over to say thank you on behalf of her American colleagues for her founding and pioneering work to establish the modern fields of hospice and palliative medicine. And I went because I knew she was dying. She had metastatic cancer. And she lived in one of those classic British row houses, kind of like some of the ones in Hyde Park, where you go in there narrow, but they're tall, right? So there's one or two rooms per floor. She came to the door with a walker and let me in and I'm looking around. Who's here to help her? No one. She was taking oxycontin and oxycodone around the clock to manage the pain of her bony metastases. And after she got me settled in her sitting room with her, I asked her how she was managing. And she was managing to live alone in a three-story house despite metastatic cancer requiring opioids because of something that is routinely provided in the UK called a tuck-in service, a tuck-in service. Someone comes every morning at eight o'clock, goes upstairs, gets her bathed, dressed, takes her very slowly down the steps, fixes her breakfast, puts lunch in the fridge, lays out the meds, settles her in the sitting room with her remote and her phone and leaves. And then someone else, and these are high school graduates who are doing this work, not professionals, comes back eight hours later and reverses the steps. She stayed home until the last three weeks of her life. She stayed home until she couldn't walk, basically, anymore because of the tuck-in service. We can't do that in the United States. Nobody will pay for it. So when we have experimented with this, we have perhaps not surprisingly seen very high impact. Some of you may know that until very recently state Medicaid programs had what's called an institutional bias, meaning you couldn't get Medicaid for long-term care unless you were in a nursing home. And I think the policymaker's intent here was to try to reduce nursing home utilization and reduce Medicaid utilization because no one wants to go to a nursing home so they hoped fewer people would spend down to Medicaid. But in fact, what they ended up doing was spending a huge amount of money on institutional nursing home care. So 25 states shifted the institutional bias of Medicaid to a community bias and basically paid for home health aides, direct care workers, tell people in their own homes for some fixed number of hours a day to support family members. And what they found was that the cost of delivering long-term care at home was less than one-third the cost of delivering in a nursing home. Now you tell me which is better quality. Now which patients and families prefer? This reminds me of a famous Churchill quote in which he said, you can always trust Americans to do the right thing, but only after they've tried everything else first. This is a good example. You guys may remember the sequester in one of the first government shutdowns since President Obama was elected in which many military and domestic programs were slashed, including as it happens, Meals on Wheels, which was cut 50% during the sequester and has still not been restored. And what this study found was that if all 48 contiguous states increased by only 1%, the number of older people receiving Meals on Wheels at home, it would prevent over 1,700 people from needing Medicaid-funded nursing home care. And in fact, there's an increasing body of evidence that the root cause of much emergency department and hospital use is malnutrition among old people in this great wealthy country where Medicare will pay for your ventricular assist device, but will not pay for dinner. So finally, I'm getting to what is palliative care. So, you can read this for yourself, but what I want you to notice about this definition is it doesn't talk about hospice, it doesn't talk about end of life care, it doesn't talk about death and dying, it doesn't talk about prognosis. It's not something you have to give something up in order to get. It is a simultaneous care model. It is basically recognizing that people with serious complex illness have needs beyond the disease treatment, like food, like pain management, like support for their families. That the modern siloed taxonomy and healthcare system where you've got a different doctor for every organ system simply cannot address. So, not this, not first life prolonging and curative care and then hospice, but this, both at the same time, with the nature and ratio of those two approaches to treatment varying and more appropriately would be this sine wave image because everyone who's taken care of chronically ill complex people knows that they define and then they have a crisis and then they're stable for a period and have another crisis where rescue medicine helps, but what they need throughout that is care focused on quality of life for both the patient and the family. So, I'm not gonna go through all the studies with you, but there are hundreds now, both from the US and Europe, that show that palliative care in all range of settings, range of ages of patients, range of patient populations and diagnoses improve symptoms, quality of life. In five studies now, one of which is a very high quality randomized controlled trial, length of life is improved, family satisfaction, family bereavement outcomes and physician satisfaction with care all improve. So that's the numerator of the value equation. And that improved quality, remember Mr. B, leads to very significant reductions in healthcare spending. Why? Because the predictable crisis does not happen because it's prevented. Because when people call at two in the morning, someone answers the phone, they don't get a tape that says if this is a medical emergency, hang up now and call 911. So the key point here is that you don't save money if you don't improve quality. If you don't meet people's needs, they will call 911 and go to the ER in the hospital and you will lose your shirt if you're a Medicare Advantage plan or an ACO or a Medicaid managed care program. If you're accepting any financial risk at all, if you don't deliver the goods what people really need, they will call 911. Until we stop, start not allowing people to do that, which hopefully we'll never get to that point. So this is a study I mentioned to you before that I'm sure you're aware of. This was published in the New England Journal of Medicine in 2010. And the reason it hit the New England Journal of Medicine is not because it showed an improvement in quality of life or a reduction in utilization. It was published in the New England Journal of Medicine because it found that palliative care actually prolonged life. In newly diagnosed lung cancer patients being cared for at Mass General, arguably the best place in the world to get your lung cancer treated. They're the ones who figured out these new biologic agents. So the control group was getting state-of-the-art high quality care. And nobody could understand this. I actually was in DC when this report was published and one of my colleagues from Mount Sinai called me on my cell phone to say, Diane, did you see that paper in the New England Journal? That can't be right. That can't be right. It flew in the face of the received wisdom of what another of my colleagues at Mount Sinai said, yeah, with palliative care, they die better, but they die sooner. That is the belief of physicians. That is a deeply held unquestioned belief of physicians. So just for the moment, let's talk about, let's assume that this is true. This is real, that it could be generalized to non-Harvard settings and other diagnostic categories. What might be the mechanism of action through which palliative care could prolong life? You can see some of it up here. Sorry? Less chemo, yeah, less iatrogenesis, less harm. And you see they were less likely to be hospitalized. What happens if you're an immunosuppressed cancer patient and you're in the hospital? And you get C. diff, you die. Hospitals are very dangerous for immunosuppressed people. Infection risk is only one of the many risks that these very fragile patients face in the hospital. So reduced iatrogenesis would have to be my number one likely reason for better survival, but what else do you see up there? What do we know about depression? Depression is an independent predictor of mortality in every diagnostic category in which it's been studied, stroke, dementia, cancer, heart failure, COPD. If you are also depressed, your mortality is significantly higher. Why do you think the palliative care group was, they had 80% less major depression? I mean, it was a very significant impact. What do you think that might be due to? Sorry? So what was interesting is that these were pretty good oncologists and they knew they were being studied and the SSRI prescribing was identical in the two groups. There was no difference in the amount of Zoloft between the control and the intervention group. So with something else, something about the relationships, something about knowing what to expect, something about feeling safe, that your deepest concerns could be heard, something about feeling like your family was being attended to, that this wasn't destroying your family. Who knows what it was, but it was a very significant impact on depression. Nursing homes are doing this now. The best model that I'm aware of is a model developed in Phoenix, Arizona called Comfort Matters that was written up in the New Yorker in their innovation issue in 2011, the sense of an ending, a wonderful article. Basically, this is a nursing home where instead of trying to restore people to youth, as many nursing homes now do, and fail at, they view their job as being responsive to the needs of the resident, whatever it is. So if somebody suddenly becomes agitated and starts screaming, they don't tie them down and give them hell doll. They assume that they're in pain. And they treat pain. They assume that they're constipated and address constipation. They assume that they have a bladder outlet obstruction and address that. They don't basically punish the dementia patient for having what non-demented people of the same age group have but can't articulate. So this model is being funded by the Alzheimer's Association. Actually, it's being piloted here in Chicago. I don't know if any of the Hyde Park places are doing it, but the Chicago Alzheimer's Association is investing big time in this model and so is the New York State Alzheimer's Association. And here's another randomized control trial. This one from Kaiser Permanente, which as most of you know, is a staff model HMO with a global budget. So they're not the place that likes to do more stuff to make more money because they have a global annual budget. And what you have here is a randomized trial of usual Medicare home care. Do you guys know what the eligibility criteria are for usual Medicare home care? Okay, you have to be homebound. So if you can leave your house, you're ineligible and you have to have a skilled need. Skilled need means you need an RN, a physical therapist, an occupational therapist. If you just need somebody to help you get dressed and bathed, you are not ineligible. It is reimbursed the same way hospitals are, a single payment for an episode of care. So the financial incentive of the home care agency is to get in there, meet your skilled need, whatever it is, and get out quickly. The less service they provide you, the more money they make. That's how they're paid. Whereas we doctors in hospitals always think we're doing such a good job when we discharge people with home care because we don't realize that home care will be gone in two weeks. And then we're shocked and surprised that the patient is back in the emergency department. But again, the system is perfectly designed to achieve that outcome. So what they did was they randomly assigned COPD, CHF, and cancer patients to get regular Medicare home care or a palliative home care intervention in blue. And the palliative home care intervention didn't require that you be homebound, didn't require that you had a skilled need, and you didn't get discharged after a fixed period of time. And most of what that team provided, aside from early on a lot of visits, was 24-7 telephone support so that people could get their needs met whenever the crisis happened. I mean, you can see if you just look at the left, there were almost three times as many home visits in the palliative care group. And in New York and Chicago, that would bankrupt that home care agency. They wouldn't be able to keep their doors open. But it was Kaiser. So they could see their spending in all the other silos, the hospital silo, the home, the doctor's office silo, the ER, and then nursing home. And utilization in all of those other silos plummeted, and the return on investment was four to one. So Kaiser does this across its whole book of business. And what's the other major healthcare system in the US that is on a global budget? The VA, the VA does this across its whole book of business. The only place we don't do this is in the mainstream healthcare system. These are data, a systematic review of four reasonable quality studies published in the British Journal of Palliative Medicine. And this was published in 2014 and found that despite wide variation in study type characteristics, quality, there are consistent patterns. Palliative care is most frequently found to be less costly, relative to comparators. And in most cases, the difference is statistically significant. Classic British understatement. Okay, so you're getting my point here. We're not doing this to save money. We're not doing this to ration. We're not doing this to withhold what people deserve from vulnerable patients. It truly is, as Don Burwood likes to say, the cost saving truly is an epiphenomenon of improving quality. So if you're trying to develop a program like the one that Mr. B gets, there are key characteristics that have to be in place. And if they're not in place, the program will fail. And this is based on a review of lots of different models of community-based, complex care management. And many insurers pay for care managers and they wonder why it doesn't work better. And the reason it doesn't work well is because they're failing on one or more of these characteristics. Obviously, you have to target the highest risk people. You have to find out from people what they want, what they're hoping to achieve from a healthcare system. You have to support the family caregiver who is the one calling, 911. You have to be able to, with expertise and skill, manage arthritis pain, not just throw extra strength Tylenol at people. And you have to be able to answer the phone with a quote, meaningful response, which means I call back within 15 minutes. People in crisis wait more than 15 minutes, they will call 911. So that meaningful 24-7 access is rarely achieved. So targeting those like Mr. B with these characteristics that we addressed before, goal setting, what I teach my house staff and students is to ask, what is most important to you, to the patient and family? I get two responses to that. One is no one's ever asked me that before. And I never, not once have had a patient say, I wanna live forever. They'll say, I would like to see my garden come up this spring. I wish someone would do something about the burden of my care on my husband. I wish I could talk to my son whom I haven't seen in 20 years. But if you don't ask, you don't know. So this is an interesting study about what's most important. This is a survey of 357 Medicare beneficiaries who are independently functioning and using a senior center. And they were asked to rank order what's most important between living longer, relief of distressing symptoms and remaining independent. So I'll give you all one guess what was most important. How is the healthcare system designed? So you see my point. If we don't ask people what they're hoping for and what they need, we're busy running off in all kinds of other directions, but not achieving the key goals of our patients and families. We talked about families and the burden on families. The out of pocket financial burden on family caregivers is, I think, conservatively estimated at about half a trillion dollars per year, and that's now. That's before my generation gets there. It's when the baby boom generation hits 80, 85, the burden on families is going to be incalculable. Those who are family caregivers are providing skilled care, wound care, medication administration, moving and repositioning people. People who are family caregivers are at increased risk compared to age match controls of additional diseases, death and personal bankruptcy. So that's how we manage our budget in this country on the backs of family caregivers. Families need help and if we don't address the needs of families, we will see these patients repeatedly in the ER and the hospital. I mentioned to you that these complex care management programs must include skilled ability to manage pain and other symptoms. And perhaps what will not be surprising to you after learning about Mr. B is that the main reason for pain that is disabling among Medicare beneficiaries is arthritis. And most doctors view arthritis as trivial, not that important. They give people Tylenol, they give them NSAIDs which they shouldn't because they're so dangerous and they never use opioids. People have to learn how to safely use opioids. People are suffering and it's not only pain, these are the other burdensome symptoms that community dwelling older people report. And I love this New Yorker cartoon, you guys familiar with the caption contest? So this is one of the caption contests and it's hard to see but there's a patient in a coffin and a doctor facing away from the patient and I should draw in a computer there because this doctor's actually still writing with a pen. And the finalists are Annie Stiffness, sorry about the weight, Annie Family History with Death. So the New Yorker must have thought this was funny but those of us who work in tertiary teaching hospitals like this one know this is actually true. That clinicians are very challenged in identifying what people look like when they're dying. And that's why so many dying people end up in the ICU because the syndrome, the active dying syndrome, most clinicians can't identify. And so the reaction is to pull out all the stops to try to reverse something that is not reversible. And so teaching people just as obstetricians know what the warning signs are before a woman goes into labor, before I went into labor with my first, I had to go home and get the room ready. I had to, like I canceled everything else. That was a sign, I went into labor that night. There are those sorts of things. The same is true with people who are actively dying. There are consistent patterns of signs and symptoms that happen almost to everyone that are not taught in medical or nursing school. So the dying syndrome actually is not recognized and that's why this cartoon is true. Now, nobody has done more to open the eyes of the American public to the way we do things now and the way we could than a tool go on day. This is his opening line. I learned about a lot of things in medical school but mortality wasn't one of them. This is Harvard educated surgeon. So to get there, we're gonna have to do a better job on workforce training. There will never be enough palliative care clinicians to meet the needs of the exploding population that I've described who are not dying, for the most part. So we need to train every clinician, every nurse, every doctor, every social worker who takes care of patients' needs, basic training in pain and symptom management and communication and coordination of care across settings and none of us got that in medical school. And few of us are getting it now even in medical school. So what, there's material on the table outside. My organization is developing at very high cost, interactive, online, CME and CEU link curricula to try to raise the skill set of the one million health professionals in the United States. Here's another New Yorker cartoon with a doctor saying there's no easy way I can tell you this, so I'm sending you to someone who can. Now, those of us in palliative care thinks this is a great doctor because he is actually sending him to someone who can. But in fact, most of the time it's just let's get another PET scan. Let's try this sixth round of chemo. Let me send you to my colleague, Joe Smith, because no one's been taught to have these conversations. And it's a procedure. We wouldn't send an intern in to do neurosurgery without training. These conversations are complex procedures like any surgical procedure and they require training and practice, which we don't do in medical school. We need to improve public awareness. Right now the public is yanked back and forth between terrifying articles and TV shows about disasters happening in hospitals and nursing homes and hospices. On the one hand, and on the other hand, the latest miracle for disease X. That is the public sense of the healthcare system. Be very scared or have unrealistic hope for cure. And what we need to do is to build a positive vision of the good so that the public starts demanding the kind of care that Mr. B is getting and understands that it doesn't have to be the way it is. Most of the families I talk to think they are the only ones going through this experience that no one else could be suffering the way they are because it's inconceivable to them that the system is this broken for everyone. But it is this broken for everyone. And we need to turn, we need to make people aware of that but also aware that there's an alternative. Because unless they have that positive vision of the good, they're not gonna demand this kind of care from you, from their doctors and hospitals and community health centers. And they're not gonna influence their senators and congresspeople. And they are our best bet to get policy change is voters. These are some ads that we did together with the American Cancer Society to try to create that positive vision of the good. There are four ads in the series. You can see it says cancer and then there's the purple vertical dancer, chemotherapy, mother. The third ad in the series is a father with his four year old daughter. It says radiation and everything is crossed out except the D.A.D. And the fourth ad is a child on a swing in a playground. It says stage four and then the ST is crossed out. To make the point that palliative care is that added layer of support in addition to what your oncologist is doing for your cancer. Not in place, but in addition. And to make people aware that they have a right to that, they deserve that, the data are clear that their outcomes will be better. Palliative care has now become a national priority. The IOM has put out now eight separate reports in the last roughly 20 years on this topic. The most recent one, which I had the privilege of serving on the committee for calls for palliative care as standard of practice across the system and required universal training and change in payment policies to increase social support, like Dame Cicely Saunders got, whether any of this will have any impact and won't just be paid for gathering dust on a shelf, remains to be seen. So we gotta expand palliative care outside the hospital because if it's only available in the hospital, people are gonna call 911 and come in, right? And we need to train all clinicians. So that's what my organization is trying to do is to scale palliative care models to community settings, which is where the vast majority of people are with their serious illness, to drive training of clinicians and to work very closely with payers and policymakers to change the rules so that the care that people need can get paid for, which it can't in the current system. This is the growth in hospital palliative care in the last 10 years. We're now at a point where 100% of US News will report honor roll hospitals, report a program, and all of this work occurred through work with other organizations, partnerships with national organizations, both healthcare organizations, payers, as well as the other palliative care organizations. So we'll close just to give you a sense of we've actually made a lot of progress with two quotes from ovarian cancer patients. This was published in 2003, but these quotes date from the 80s. These are ovarian cancer patients who survived but had the consequences of chemotherapy. I had the most excruciating pain I had ever experienced. The pain medication did not even begin to penetrate the pain. I thought I was going to die. It felt as if my feet were in tight ski boots I could not remove. My balance was poor and my feet kept bumping into things. I couldn't stand for more than three minutes if I tried my feet ached unbearably. My hands were so numb that if I reached into my purse to get a lipstick, I come up with a comb or keys instead. I could not tell the difference by feel. My handwriting was so uncontrolled I could not write a marketing list, let alone a check or a note. So that was the 80s. So we are making some progress and we have a ways to go. Thank you very much. Thanks, Ayaan. It was very well presented, compelling. And certainly to some extent you're preaching to the choir here. All of us really, I think, would agree with you. The question I have is what do you think the barriers are? I mean, it makes so much sense. And you talk about the need to mobilize political force, but do you think it's merely inertia in the part of payers, et cetera? Do you think that there are too many vested interests in the sort of acute care medicine that make it difficult to overcome that? Do you think it's sort of still a death-denying culture? What are the factors you think are the biggest barriers to progress? Okay, you can hear me. So the question is why is something so obvious and so simple not happening? And the main reason is there was no way to pay for it until the Affordable Care Act. And thanks to the Affordable Care Act, there's an increasing amount of the health system that is accepting financial risk. And the more financial risk a community or a hospital or a clinician is accepting, the greater their interest in implementing palliative care models. And the delay that we're seeing now is the fact that it continues to be the case that 90 plus percent of all healthcare is paid for fee for service. So just on NPR yesterday, there was a discussion about hospitals wanting 30-day readmissions to be less, but not willing to invest in the community-based services that are necessary to reduce those 30-day readmissions because they're still doing better with the beds, the heads and beds, despite the 30-day readmission penalty. So until the financial incentives are strong enough that there's no choice, but to invest in meeting people's needs where they live, it's not gonna change because right now the financial incentives still very heavily weighted towards admissions unless your hospital is accepting a significant proportion of its income through risk-bearing levels. Now, what's the other reason it's not changing? 20% of the economy is healthcare. The majority of that is hospital driven. If you start reducing hospital footprints and hospital size and reallocating those resources to the community, the tax-based disruption to communities is incalculable. The people who will not be employed means huge hospitals are major drivers of employment. We need to retrain clinicians and invest money in doing that, which no one is doing. People will continue to practice as they were trained if you don't give them another way to practice. One of the articles I left outside was my experience working together with an oncologist, with a patient with metastatic lung cancer who lived six years thanks to this really good oncologist's care, but who, as her disease was progressing, was unable to talk to her about what to expect in the future. And she found me at a different medical center and he offered her, we worked together for a year and a half, and at the end of that, he offered her intrathecal chemotherapy for her brain men's. And she knew that that was fishy and came to talk to me about it. And I said, you know, this is really outside my area of expertise. Let me call your oncologist and we'll talk about it. And when I asked him, what was he hoping to accomplish with the intrathecal chemotherapy, he immediately said it won't help her. This is by phone. There was this sort of long, awkward pause. And then I said, because I was the consultant, he was the primary, I said, do you want me to encourage her to go ahead with it? Anyway. And then there was a very long pause. And he said, I don't want her to think I'm abandoning her. So what was driving his offer to her was not money. It was his training. He did not know any other way to continue to care for her other than to provide more cancer-specific treatment. And he didn't want to abandon her because he cared about her. I think that's at the root of a lot of this. So I think training is at the root of a lot of what needs to change. Thanks, Dr. Meyer. Being a graduate of Sinai, both med school residency, I definitely benefited from learning about the interpersonal interaction and advocating for your patient, even as an inpatient. The question I have is not so much on a national policy level, but more on a local level in your hospital. We have this amazing era of technical, procedural, medical innovations. And you have these people trained to employ them. And as you're saying, as that last oncologist, they want to employ those methods. How do you fight the smart tariff battle in your hospital, so to speak? How do you, like what successful techniques have you used at Sinai to really help embed the process of palliative care at least considering complementary services? Right. So remember, I mentioned that Mr. B only found us by pure chance. And I think the only way to make sure that all like patients get the same high quality care is to do universal and routine screening on admission to the hospital, on admission to a cancer center. Now our hospital is now doing that, not because the oncologists wanted to, to be frank, but because the hospital made them because their 30 day readmission levels were outrageously high. So they were really hurting the hospital financially, the oncologists, because of the readmission penalties and the very high hospital mortality among our cancer patients. And this is despite the fact that we've been doing palliative care at my hospital since 97. And what the hospital did was fund a six month pilot using a checklist and a two or one day type checklist to identify people who had certain risks, stage four metastatic malignancy, poorly controlled symptoms, overwhelmed family caregiver, more than one hospitalization in the prior six months. And there was one other I can't remember. And if you were positive on any one of those, there was a routine palliative care consultation. And this is both outpatient and the three cancer floors in the hospital. 30 day readmissions fell 60% in six months. Hospital mortality fell 45% in six months. And then the hospital made permanent the model and paid for two additional teams. Now the oncologists routinely say they don't know how they managed without us in the past because they can focus on the cancer. And we keep people out of the ER by managing their pain and other sources of distress. So we have to go from waiting for the attending physician to maybe think of it to a standardized approach to identifying and intervening on high risk patients. And again, as the financial incentives move in that direction, there will be more pressure to do that. Thank you for this very thoughtful and sincere presentation. I think I understood almost everything you said, except if you could clarify your first formula for me, you said that the value is equal to quality over cost. I can understand the cost. I could to some extent understand the quality. But what do you mean by value? Because value to me is highly individual. I cannot put value on your life and you cannot put value on my life because at each stage of our life, we have a different value. But Russell, the philosopher at the age of 19, he wanted to commit suicide. He couldn't find any value for his life. At the age of 90, he wrote a book, A Road to Happiness. So are we not paternalistic in telling what value of your life is? Because if I were to commit suicide here, the value become infinite. Who is going to get that value? So I totally agree that what I would say is that quality can only be determined by the person, the recipient of the care. So for Brittany Maynard in Oregon, quality was getting assistance in a suicide. For her, that was high value care that she was given assistance committing suicide. For me, from a policy standpoint, it was a very low value care. It's a harm to society, real harm to society. But if you stick with self-determination and the principle of autonomy as the trumping principle, then the numerator can only be determined by the recipient of the care, which is why you have to ask. Yeah, I enjoyed your talk. So getting back to the oncologist who's getting chemotherapy that he knows doesn't work. I think one explanation is the fear of abandonment, but I think there's also structural incentives to do things based on the fact that that's how that cost center makes their money. And so it seems, I think you're right about the fee for service and the payment per procedure is what drives a lot of this type of care, especially the use of emergency rooms, which used to be, that used to be just a big cash cow and now people are just so cluttered. But it seems to me too that what you're calling for in a palliative care position is also would be a person who's staying care of a patient would do a very similar kind of job. Why did Mr. B's doctor not do anything about this? He knew he'd been in the ED three times in the past two months and he did nothing because he never had any training. It should have been Mr. B's doctor that organized all of this. Had Mr. B's doctor been trained appropriately, there would never have needed to be any palliative care involvement. That's why, again, the investment in generalist training is my highest priority. It shouldn't be specialist care. It should be routine, high quality primary care. Thanks, Beth. To me, the important thing you said that I think I've not really heard a lot in the conversation is really remembering about the caregiver. And having recently gone through this with my dad, the most important doctor that talked to my mother was her gynecologist who by some fluke, she had an appointment and she kept it despite the fact my father was ill and there was a form to pull out ahead of time and it said what's going on in your life then my mother wrote it down. And the gynecologist met her with an antidepressant prescription and a prescription that said take one 24 hour period off a month and I think an up-to-date or some similar type printout of how to treat, how the caregiver needs to treat themselves. And I was shocked that it was her gynecologist that came up with that and this is a gynecologist that specializes in post-menopausal women and so I'm sure that's why she thought about it. But no other doctor that my father was seeing ever asked my mother that question. And because of that statement, I flew home once a month to make sure she had a 24 hour period off. And it was quite exciting and you don't see it. Physicians practice as we are trained. Thanks, I really enjoyed your talk. I'm a medical oncologist and I just finished rounding past weeks attending on our new supportive oncology service where we rounded the palliative care attending and I thought it was an awesome experience and really enjoyed it. One thing I noticed is in terms of the assistance and disposition of patients for social work and case management and that this palliative care model of thinking maybe requires different thinking upon our case management and social work. And what type of training have you done at Sinai what do you train the social workers or case management have to maybe pull together these resources out a little bit out of the box that are not typical of how case management works in other wings in the hospital. You know, it's interesting, it's a very important point and I will say that the way the social workers on the consult service and on the inpatient unit at Sinai work with their peers has evolved and earlier it was resented by the floor social workers and care managers like who are you to tell me how to do my job. And so it's been an iterative process of not taking away power and authority from the frontline team, the nurse, the social worker, the clinician but basically offering help when people ask for it so that the initiative comes from the team. One of again the courses that we have developed with CME and CEU are aimed not only at doctors but also nurses and social workers because just as doctors have not been trained in these basic core skills neither have nurses and social workers and the whole team is really important for this very vulnerable population.