 On behalf of the McLean Center for Clinical Medical Ethics, I'm delighted to welcome you to today's lecture in our seminar series on ethical issues at the end of life. Next Wednesday, Dr. Joel Freider from Northwestern University will speak on end of life decisions in pediatrics, why they are different. And so that'll be here in this room next week. I now am delighted to introduce my dear friend and colleague, Dr. Ranjana Shrestava. Dr. Shrestava is a medical oncologist, educator, an award-winning writer, a columnist for the guardian and a regular physician consultant on Australian television and radio. Ranjana did her medical school residency and fellowship training in oncology in Australia. In 2004, Dr. Shrestava was awarded a Fulbright Scholarship, which allowed her to do an ethics fellowship here at the McLean Center. On her return to Australia, Ranjana became a fellow of the Royal Australasian College of Physicians. Ranjana now practices oncology in the public hospital system in Melbourne. She's on the advisory committee to the Health Commissioner of Victoria, Australia. Ranjana has written widely on the subjects of medicine, ethics, the doctor-patient relationship, and communication between doctors and patients. Her papers appear frequently in the New England Journal and in JAMA. Some of you may have seen the paper last week on the death of a colleague. Ranjana's books include Tell Me the Truth, Conversations with My Patients About Life and Death in 2010, Dying for a Chat, The Communication Breakdown Between Doctors and Patients, published in 2013. That book won the Human Rights Literature Prize. And Ranjana's forthcoming book will be published by the University of Chicago Press. It's due out in 2015. And it's called A Cancer Companion, An Oncologist's Advice on Diagnosis, Treatment, and Recovery. I've had an opportunity to see a preprint of that book, and it's a remarkable book. There's not been anything quite like it in the medical or oncology literature. Ranjana's contributions to medicine and patient care were recognized with the Monash University Distinguished Alumnus Award in 2014. I'll give you a heads up that tomorrow Dr. Shrestava will be giving a lecture entitled On the Heart of Medicine, Reflecting on Things That Matter. And that lecture will be in this room at 5 p.m. tomorrow. But today Dr. Shrestava will speak to us on the topic you see behind me when good intentions aren't enough barriers to optimal care, to optimal end-of-life care. Please join me in giving a warm welcome to Dr. Ranjana Shrestava. Good afternoon and thank you, Mark, for having me here. Chicago is like a second home to me ever since I did my Fulbright. And it really is an honor and a privilege to be back. Most of you, when you think of Australia, probably think of this. This is the Sydney Harbour Bridge. I would strongly encourage you to visit it at least once in your life. This is where I come from. This has been on your screens recently. This is the Australian tennis open coming to you from Melbourne, which is where I live and work. So the objectives of my talk today are to identify some of the barriers we have to good end-of-life care, exploring why they exist, and then discussing how we can all help. And although I talk about things from an Australian context, I think it will become fairly clear to you early on that the problems you have are the problems we have. And I would say that those are problems that many Western countries share. So beginning with the World Health Organization resolution, which says that palliative care is an ethical responsibility of health systems. And that is the ethical duty of healthcare professionals to alleviate pain and suffering, whether physical, psychosocial, or spiritual, irrespective of whether the disease or condition can be cured. And that end-of-life care for individuals is amongst the most critical components of palliative care. About 40 million people each year currently require palliative care, and it's a very shameful fraction of them that actually end up receiving it. So here is a little bit about the Australian healthcare system where I work. So it's a very generous, one of the world's best government-funded, completely government-funded healthcare system, which is called Medicare. Two-thirds of our funding comes from the federal government, and a third comes from state and local authorities. Australia has a population of 25 million people. The healthcare cost is $140 billion. There is absolute free access to public hospitals, whether or not you possess private health insurance, and about a third to 40% of Australians also have private health insurance, which they tend to use for elective procedures, whereby it's a little bit easier to get your hip replaced early or your knee replaced early if you have a private health system. There are many rebates or so-called benefits for health services under the Medicare Benefit Schedule, which means that for any particular medication, whether it be something like Avastin, which many of you will be familiar with, there's a system app which costs tens of thousands of dollars here, or something as cheap as Frisamide, the average person will pay no more than $30 for the script, and if you are on social security, you pay something like $5.70 for that script, regardless of how much the drug costs. So it's a pretty generous, I would say. Highly subsidized medicines under the PBS, and I dare say that the American patient probably subsidizes a lot of the cost of Australian medicine. Private health insurance, up to 50% actually of the population, has some level of private health insurance. Once again, the federal government actually subsidizes the cost of purchasing this insurance. You have no obligation to use it, so you can come into a public health care system and decline to use your private health insurance for whatever reason. You may not wish to pay the copay or whatever. It's very useful for elective surgery, as I said, and it does permit doctor choice, which you don't have as much in a public hospital system. The leading causes of mortality in Australia are pretty much the same as they are here. Cardiovascular disease, stroke, dementia, cancer, especially lung cancer, COPD, and cancers account for roughly a third of all the deaths. So here is the national strategy for palliative care and end-of-life care that was introduced way back in 1994. So Australia is actually a country that's been quite ahead in the realm of palliative care. The national palliative care strategy informs policy formulation and service delivery across all the hospitals and community hospitals, and there are four key pillars of it, which I'll go through, and in practice, it's had quite widespread support. It's a fairly decent strategy. Before going to the pillars, so the current delivery is by palliative care physicians, of whom we don't have nearly enough, general practitioners or your family practice doctors, inpatient hospices, once again, we have very few of them and far between, community hospice programs and then volunteer programs, which are actually becoming increasingly active. As I said, the universal healthcare, the health cover is a sacred cow in Australia. There is reasonable community awareness of palliative care strategies, and there's also a lot of physician goodwill and acceptance of the fact that end-of-life care is important. So going back to the pillars, so the first pillar of the national palliative care strategy is about awareness and understanding, and a fairly self-evident comment to enhance the appreciation of death and dying and to enhance the medical and community awareness of the importance of the timing of introducing end-of-life care or palliative care. Appropriateness and effectiveness, well, appropriate and effective palliative care should be available to all patients in need. Once again, a fairly broad statement. Leadership and governance of this strategy to promote collaborative, proactive, and effective governance, and I'll come back to this and some of the issues related to this. And then, of course, capacity and capability is something that all countries need to think about in terms of building and enhancing the capacity of all sorts of sectors to deliver effective palliative care. So what are some of the barriers to palliative care that I see in Australia despite having a 20-something-year-old palliative care strategy which sounds pretty good on paper? Well, let's go back to awareness and understanding. So this is quite an interesting study, a small study, as these studies tend to be, but it took about 100 family practitioners, community hospice nurses, and aged care facility workers where naturally a lot of palliative care should be taking place. They were delivered questionnaires and short interviews which judged both factual knowledge as well as attitudes to palliative care. The attitude questions were along the lines of once level of comfort with palliative care, the frequency of referrals someone would make, what was perceived as giving up on regular care, something I'll talk about a little bit more tomorrow, and then some of the language barriers that exist in a very multicultural community like Australia. Factual questions were pretty self-explanatory, as you will see. So is palliative care curative? Should euthanasia or is euthanasia currently part of the palliation strategy? The role of chemotherapy in advanced cancers, the role of financial support, and the importance of bereavement support when offering palliative care. So somewhat surprisingly and disappointingly, I would say only 38% of doctors and 64% of hospice nurses and 8% of aged care workers were able to answer these questions correctly. These are fairly routine questions one would think about palliative care and end-of-life care. No general practitioner, and general practitioners at least in Australia are really the doorway of entry to the healthcare system. No GP was able to identify up to the 12-month timeframe of holistic palliative care. So we commonly see that palliative care has become synonymous with end-of-life care towards the last few days of care, but obviously as many of you would know, it's more than that. And so having GPs as the backbone of a healthcare system and hospice nurses and not being able to appreciate these things seems to be a large problem. Two-thirds of aged care workers did not feel responsible for initiating a palliative care referral. And yet in an aged care facility, these are the people who run the show. GPs made referrals once every few months so probably they felt that they weren't particularly familiar with making referrals perhaps because a general practitioner would see all comers and they would only probably have a few cancer patients or patients requiring palliative care on their books at any one time. Hospice nurses however, made weekly referrals to palliative care services and yet they had a fairly suboptimal understanding of the details that were involved. Interestingly and thankfully, personal prejudice did not seem to be a significant factor that was revealed in the lack of making referrals. Common barriers that were identified were things like lack of resources and funding, lack of education around the area, lack of community education so the community's acceptance of palliative care. And of course the common thing that we hear about time and time again, the fear of giving up on the patient. Let's talk about appropriateness and effectiveness. So in 2014, the Australian government actually put out an industry alert which is not something it does very often. And what had happened was that they reviewed the aged care complaint scheme and this goes through the aged care commissioner who is a fairly senior official and the health department, the federal health department. And the findings and what they were putting out an alert about was that there was a lack of explanation in aged care facilities about palliative care versus end of life care, something I referred to earlier. There was a very poor recognition of the changing care needs of patients. There was very little identification of the goals of care of individual patients. In adequate communication in aged care facilities about the expectations that people should have around palliative care. Great confusion about the point of contact. So when somebody is deteriorating whether we should call the general practitioner or whether the aged care facility has the means to make a palliative care referral. And unfortunately, poor education and training which I think affects so many organizations. Talking about effectiveness, I decided to highlight the state of Aboriginal Australia. So Aborigines make up 2.5% of the population. And really as happens with many indigenous cultures there's been historic mistrust, sort of dispossession, illiteracy and poverty that affects the Aboriginal population. Their life expectancy is closer to sort of sub-Saharan Africa rather than Australian life expectancy. Something which is really shameful. And infant mortality is at par with some of the world's worst. So Aboriginal palliative care, I mean palliative care in the non-Aboriginal community is hard enough. Aboriginal palliative care is dismal. And there are few interesting reasons for it. And Aboriginal health gets funded with a lot of money as does Aboriginal welfare in general. But here are some things that we don't tend to think about with different cultures. So with Aborigines, mitigating pain in sort of a culturally determined sickness is very different from treating pain in other people. There is a lot of belief about natural justice and punishment that must come to a perpetrator, whether via an illness, suffering, et cetera. Injectable drugs are perceived as poisonous. So you can imagine that for palliative care that is a huge barrier if you can't give somebody morphine, for example. Decision making happens by skin groups. So even among Aboriginals, there are different skin groups. I mean that is something that the average practicing physician or nurse would just have really no idea about unless you went and worked in such a community and tried to learn their culture. Their ceremonial gatherings can be very prolonged. I've seen this for myself. There are up to 30 people who show up at a family meeting. I mean that's huge. We can't find a room to fit people in when there is a family meeting of that sort. And gender and hierarchy are really important. So you can't always assume that someone's spouse is the speaker for them or that their eldest son takes responsibility as it might happen in other cultures. It may be, I mean you really have to be familiar and ask people about who is the representative. And there may be many representatives which creates problems in a family meeting as you can imagine. Other multicultural issues faced by palliative care and once again, I don't think they're unique to the Australian community. So for example, there is no direct translation of palliative care in the Greek language. Now Greeks outside of Greece are the largest population. The largest population is to be found in Melbourne, Australia. So we have entire communities of Greek speaking patients. There is a huge reluctance to name death and dying and name a diagnosis like cancer in the Greek community that we see. There is a distinct lack of knowledge in the Italian community that palliative care can be for conditions other than cancer. So you can imagine when you introduce palliative care to an Italian patient, they suspect that they have cancer that you're not telling them about even though they don't have cancer because that's the only framework within which they know about palliative care. Many Indian families struggle with food and fasting habits. So you're asked to take a drug on a fasting stomach or you may be asked to take a drug at other times. Many Indian communities have so fairly strong rules about food and fasting and religious aspects but there is really no provision for any of these multicultural aspects of palliative care or very few anyway. Leadership, what about leadership in the area of palliative care? So the more I work in the palliative care area, I find that dying patients and their problems or their families are not really the problem. I think our habits are and the way often we approach medicine. So for example, as an oncologist, I go to many multidisciplinary meetings and they're the standard multidisciplinary meetings that you would be aware of. So in oncology, there's a clearly defined professional identity. There's a radiation oncologist who knows all about radiotherapy. There is the oncologist who talks about chemotherapy. There's a surgeon who answers the surgical questions and we don't tend to crisscross each other's boundaries. We respect them and we believe that they know best. So there's a lot of delineation of role. There's hierarchy and expertise is fairly isolated and usually goes unquestioned despite the fact that these are multidisciplinary meetings. Interdisciplinary teams, on the other hand, are different. They are interdependent. They share functions and they lead differently. They lead variously depending on what the needs are. So in a way, it's analogous to a hand. You have a finger and each finger on its own can be pretty useless but put together, the fingers of a hand give you amazing dexterity and it's more than the sum of the individual parts. And this is the kind of team that's essential to have in palliative care because the other kind of team doesn't really work. Governance, governance of palliative care, what we find in Australia is probably what you find here that there's a lot of role ambiguity. Who should introduce palliative care? Who should lead the palliative care discussions? Who should be the lead clinician? There's a lot of interpersonal conflict, inadequate communication at all levels, workplace dynamics, they play a role everywhere and I guess ineffective leadership because we are all feeling our way in this new field which really shouldn't be that new but seems to be. Capacity building, well like yours, ours is an aging society. Disease profiles are changing. I also do some work on the internal medicine service and when I was an intern, a single issue problem was what we saw. So someone came in with pneumonia or a urinary tract infection. Now about a third of my patients are demented or they have serious cognitive decline. No one gets in past the emergency department with a single problem and I'm sure you see the same. They all have multi-system disease. How do we meet people's stated needs? That's a problem in itself many times and then to identify the unmet needs. Not only in anglo-saxon populations but in multicultural populations whereas I've just said that the gap is so much larger and then of course rural settings versus metropolitan academic centers which have more staff and more capacity. So something like 56 million people die globally each year with two-thirds of them requiring palliation and this need is unmet in rich and poor countries. It's an issue of clinical training, it's a workforce issue and the ability really to reach healthcare professionals in all kinds of settings and teach them about the basics of palliative care. In terms of capacity, hospice care is something like five times less costly than hospital care. Being enrolled in a hospice program does reduce emergency visits. I see this all the time in my own practice where a hospice nurse calls me and we preempt a hospital admission by either reviewing a patient in clinic or providing information so that they can be looked after at home. It also reduces acute hospital stay, pharmacy costs and as I will talk about in my talk tomorrow, advanced care planning has actually been shown to reduce stress and depression in surviving relatives which really shouldn't come as a surprise. So it is said that up to 90% of patients express a wish to die at home or at least in a home-like environment. Only a quarter die at home and the number is probably getting less. More than 60% of people in Australia die in the hospital system but of those who are introduced to palliative care and hospice services, only a quarter die in hospital. So their wishes seem to be more achievable with the introduction of palliative care. Well, the question really is does can money buy better care? So let's look at that. Barriers that I see to good end-of-life care or palliative care delivery include sort of, we are very fixed on the traditional metrics of success which is how we have always been measured. So in Australia, and I'm sure this is true in parts with you as well, volume of care is really important. So we have this rule that there should be no more the government mandates that there should be no more than a four-hour delay, four-hour wait in the emergency room after you have been assessed as requiring admission. Now it's sort of very arbitrary and what happens is yes, some people are ready in four hours, other people aren't because the wards haven't discharged the patients in time or people need more workup but there seems to be this incredible amount of stress associated with getting onto the computer and saying that this patient has cleared emergency because we are fine if we don't. Turn over on the ward. So every couple of months there's some other arcane rule that comes around that gets withdrawn after two months saying that three patients need to be discharged from the ward before nine a.m. So ridiculously what happens is that the trolley is wheeled out into the corridor and the patient waits to go home but the computer now says that that patient has been discharged. And of course, elective surgery waiting time. So in any government funded healthcare although Australia does extremely well on any kind of healthcare measure it's never a zero sum game. And so elective surgery waiting times I mean that the papers are splashed with people who have been waiting with a bad knee or a bad hip for months or years and so on. So we become very compelled as physicians to address these traditional metrics of success. There is also unfortunately a very deep reluctance and then perhaps also an inability to communicate with patients about death and dying. There is a great reluctance to encourage the involvement of palliative care early on in the piece although this does appear to be changing albeit slowly. I think fragmented care by multiple specialists is just getting worse everywhere. Just the other day before I was ready to fly here I met an intensive care specialist who identified himself as a renal intensivist. So I could just picture him kind of just dialing the dialysis machines and that's it. Sort of looking down here and never looking at the patient and presumably he had a pulmonary intensivist to back him up and a cardiac intensivist and so on. So where will it stop? And hence I think we have a lack of role models for our junior staff. If you work with a renal intensivist presumably you feel that that's how niche that's the kind of specialization you have to do to make it to work in a good academic center which is a little bit of a shame I personally think. So as I was discussing with Mark just a few minutes ago palliative care continues to be a very high spoken priority. Lots of people pay lip service to it and I suspect it's more than lip service because people who have experienced good palliative care know its value. It's really invisible until you need it however. I mean it's not something that people really talk about it's not something that you see in ads on television, et cetera. There's a huge shortage of nurses in palliative care and the nurses really provide the backbone of care and if you have a bunch of good nurses led by a physician and able palliative care physician they do great work in the community. There's also a shortage of palliative care doctors however and it's really at the end of the day it's also not lucrative work compared to procedural specialists. So there is that barrier to entering palliative care as well. So talking about communication which is something I think about quite a lot so we know that it's a learned skill but while I was preparing for this talk I decided to look up the literature on where the communication skills training works because there's a lot of, there are lots of naysayers out there about CST. That's how I fear that a lot of people feel whenever I spark up and talk about teaching doctor-patient communication. So this is a fairly heartbreaking Cochrane review I thought. So 15 studies, 1500 doctors and nurses. I must say that the courses were fairly variable. So anything from a one hour tutorial to intensive three day workshops that was quite variable post course follow up and as you can imagine highly variable end points. So I'm not sure that they're all good studies. Anyway, so there was an improvement from CST communication skills training in a doctor's ability to show empathy and ask open-ended questions to create a supportive environment. So far so good, right? This is what the plain language conclusion was. We did not find evidence to suggest any benefit of CST to patients physical and mental health, patient satisfaction levels or quality of life. However, for few studies address these outcomes. Furthermore, it is not clear whether the improvement in communication skills is sustained over time and which types of CST are best. It kind of takes us back to square one, but I think it's important to reflect back on what the Cochrane review said in the first place was that these studies were so variable. And you can imagine that a one hour tutorial is not exactly the way to kind of inculcate good communication skills in your resident staff. So my take home message was not that it doesn't work necessarily, but we need to make, we need to find better ways of teaching our staff and doing more research into what actually works. This was a paper from a cancer journal. So patients who met oncologists post communication skills training were less depressed, but this did not significantly affect the level of satisfaction of patients. And so this study was saying that there may be a ceiling effect to patient satisfaction from just from communication, which makes sense. I mean, you still need to do good medicine and treat your patients appropriately for overall patient satisfaction to be improved. This was another study that looked at 50 patients with advanced gastrointestinal tumors and a full three quarters of them displayed a desire for full details about their diagnosis and plant treatment. 50% of them after that thought that the cancer was curable. 22% said that end of life discussions took place. These are all patients with advanced GI tumors which don't necessarily have a good prognosis. Aside perhaps from colon cancer which has a better prognosis even in the advanced state. Patients who acknowledged their terminal illness had lower quality of life and higher anxiety status. So I think these studies are a good example of why people sometimes shy away from discussing palliative care or end of life care with their patients because of this kind of conclusion that makes you think, well, I don't want to make my patient more anxious. Other issues I think that you and I both contend with, you know, I often wonder whether consent for any kind of modern treatment, especially things like chemotherapy or highly invasive stuff, is it truly informed? How much unnecessary toxicity and cost do we make our patients bear? And there is a misperception amongst both doctors and patients seems to be a fairly significant barrier to optimal end of life planning. This was an interesting study. Some of you may have seen it. So 1,200 patients, a big number of patients with advanced colon and lung cancer were studied. 61% of lung cancer patients and 89% of colon cancer patients did not understand incurability four months post diagnosis. They did not think that this was an incurable cancer. However, inaccurate perception of their disease correlated with better communication scores given to their physicians. So people who perhaps did not discuss as fully the incurable nature of someone's illness and talked more about sort of hope and having more medications down the line and more chemotherapy were perceived to be better communicators. And I certainly see this in my own experience and I wrote a couple of columns about this in the Guardian where I was dumped by a few patients because I told them the truth, albeit with sympathy and empathy, but the thing is they didn't want to hear the truth. And so they switched oncologists, got treatment and still died within two or three weeks but hooked up to an IV. And it's a difficult dilemma. I mean, no doctor wants to be rejected. No oncologist wants to feel that they have upset their patients so much. But you know, this happens. I'll have a drink here. So you know, one of the messages we send to people then is if you communicate better and you're honest with your patients and you are choosing to talk about palliative care and end of life care, you might be graded lower than your colleagues. But I think a more plausible conclusion is this, that honest discussions about palliative care, about end of life do evoke emotional distress and we need to be prepared for it and we need to prepare our patients for it. I think we do need to balance information giving with empathetic communication and really it's a challenge to get better rather than to say, well, we give up because it doesn't work anyway. So I did say that I'll talk a little bit about the way forward. So how do we move forward from all of this? Well, I think when we are planning communication skills training, it's really important to involve patients and carers in doing so rather than trying to imagine what they might want. This hopefully the Victorian government has asked me to advise them partly on communication skills training in our hospitals because they're government funded hospitals. The government does have some leeway to mandate some of these programs and I think that we really need to involve other people than doctors who know better and who may know best. Outcomes need to be measured at various time points not just after the training or sort of two weeks later. Mandated CST is under consideration in many places in Australia and it may be made part of credentialing, especially things like talking to people about advanced care directives, about resuscitation issues and we seem to find that if you run these communication skills workshops, you get a very self-selected group of people and they're probably not the people who need to be there anyway. It's all the others who don't come and who think that they don't need to be there. So how do you get them? Funding and investment is a huge issue. I think it's an issue everywhere, especially in cash-strapped or so-called cash-strapped systems and then I think expertise in research. Communication skills stuff has always been considered to be soft. It's never considered to be an equivalent to scientific research, which means that few people want to study it, few people want to really explore it. It's kind of got this whole look of, you do this to be a nice doctor but as you all know, it's not just about being a nice doctor, it's cost effective, which is why finally I think the Australian government is waking up to this because it actually reduces cost of care. So this is something I always think around this time of a talk, that's all very good, but what do I do in my little office? So I wanted to give you an example from Australia. This is Peter Dutton on your, here is Peter Dutton who was our health minister until not so long ago, that's Tony Abbott who is a prime minister, conservative prime minister, road scholar doing particularly poorly. Last week he awarded a knighthood to Prince Philip which has gotten him in all sorts of trouble. He's a real monarchist so people are dying to kick him out just for that, but that's another story. So what happened was that, they're always talking about reducing the cost of care, so Peter Dutton and Tony Abbott in their wisdom decided to bring in a copay. You would laugh at this copay, it was seven dollars to see the GP and having lived in the United States and experienced the healthcare system, I know that that would be such a small amount. So that was the Medicare gap. You were supposed to pay seven dollars for every medical interaction you had and it was supposed to cut down sort of the people who just walk into hospital and people really do with an ankle that's been sore for six months and they come in on the Easter holiday when nothing happens. So it was to bring in a bit of accountability. So that was the Medicare gap and there was a huge, furious and unprecedented uproar, outrage in the Australian community about this seven dollar copay. I mean people just went up in arms. So there are some more cartoons for you. You know and the whole premise was that it's seven dollars to date, it'll be 17 dollars tomorrow. Before you know it, we'll have an American style system. So then the GPs rose up in angst. So general practitioners, as I've said they're the backbone of the Australian healthcare system. They're a fairly docile bunch. They kind of do their own thing. They have a fairly powerful union but you don't hear too many doctors really kind of standing up and speaking against policies because generally Australia sort of works all right. It's fairly egalitarian. This particular poster appeared in every general practice around the country and what happened was that the GPs were saying that if the government introduces a seven dollar copay, it will be passed on to the patient. So the doctors weren't going to bear the cost. So people like my husband who's a GP picked up a pen and wrote opinion columns. I mean they don't do stuff like that. They just go to work and see patients but this outraged everyone. So before you know it, within two months the GP copay was gone. A new health minister had come in. She was hold back from a Christmas holiday with the words we have listened. So the GP copay was gone. Just like that. And one of the GPs who is quite a powerful union member made a really important statement and she said doctors don't tend to criticize government policy. We tend to do our work quietly but don't forget she was addressing the politicians that we see more of your constituents than you ever will and we have enormous power and we wield enormous power. And this was perhaps the best example in my living memory of the power of doctors to influence policy. So back to end of life care, palliative care. I think it's really important to think consciously about end of life care and palliative care with our own patients. It's okay to admit uncertainty. I think this is really difficult for doctors. It's really difficult. So many times on the medicine ward service in particular I meet with respiratory physicians and I say, this patient has bad COPD. They have practically lived in the hospital all year long. They keep going in and out of intensive care. Why don't you talk to them? Why don't you talk to them about their end of life care rather than this trip back and forth? And typically the response is, because in COPD we are never sure what will happen and the contrast is in cancer, you know your patients are going to die, but COPD patients live like this for years sometimes. So I think we do need to get better at admitting uncertainty to ourselves but then having the courage to talk to patients for home. There is really not much quality of life in shooting back and forth from ICU. Speaking with our junior staff, I think that junior staff listen to us, we are their role models and if they don't hear and if they don't see us doing the things that we tell them are good for patients and they grow up just like the rest of us and then don't do it either and we train a whole new generation of doctors just like the last. Also I think it's really important to sort of change the hierarchy a little bit slowly and enabling our non-medical colleagues to speak up. In particular nurses who I at least feel have a much better handle on the patients they look after than the physicians do sometimes and so I think enabling them to have a say in the introduction of palliative care or end of life care what the family might have been saying at the bedside, what the patient says in the shower, in the bathroom, I think those things are quite important and then advocating at all feasible levels so that might mean from government all the way to talking to your individual patients about particular policies. I wanted to close with a really nice example about which I was quite skeptical when it came about. So this is the hallowed Sydney cricket ground. So the SCG and you might be able to make out the face of a person there. So that's Jane McGraw. Jane McGraw was married to Mr. McGraw. It'll come to me in just a sec. Brett, Brett maybe. And she died of metastatic breast cancer at a fairly early age. She had metastasis to the bones for a good five or six years and it was very traumatic. Her husband was playing in England at the time and he was called back because she had just had a word to the oncologist and her cancer had spread. It was all very traumatic. Much beloved couple of cricket all around the cricket world really. So Jane McGraw ended up dying of her cancer and it was a very public demise. And she spoke a lot about how the nurses had helped her the most during her illness and the palliative care nurses in particular. And she kept paying tribute to the fact that had it not been for the palliative care nursing and the hospice support, life for her and her three children, two children would have been very different. So when she died, the McGraw Foundation was formed and they decided to turn the SCG pink in support of breast cancer for a particular day of a cricket tournament that happens every year during the December, January period. Sort of televised worldwide, huge audiences. And when I saw this, I wasn't sure that it would work. I was kind of skeptical because there are so many charities and they're all trying to do the same thing and like you, I think Australians also, the pinkification of breast of cancer has not gone down necessarily well across populations which feel that other cancers have been deprived of attention and breast cancer gets far more than its share of attention as some would say. Anyway, this is many years later now and it's amazing how the public has absolutely embraced this whole phenomenon and these are guys who turn out in pink and the whole crowd turns out in pink and the players wear, there might be some players as well, they wear pink and it raises millions and millions of dollars from that one day. And you know, the prime minister will show up because it's a good place for publicity and that always gets other people showing up and you know, when prime ministers and other important people show up they give money to the cause. So it raises multiple millions of dollars and to tell you the truth, I was pretty skeptical about what it would do and it's become a fixture on the cricket calendar around the world and even the teams that come, so there was an Indian team this year, Sri Lanka played Australia last year, they're all dressed in pink. I mean, I don't know how these macho cricketers feel about it, but they all do it and they look great and it raises a lot of money. So you know, people power is amazing. So in conclusion, I hope I have showed you that end of life care is genuinely important. I'm sure that if you are here, you think so too. I think there are many systemic and individual barriers to getting end of life care right and we just need to keep working on it slowly, slowly. And what I think is that the true victory of palliative care may be when palliative care doesn't exist as its own specialty and when it's trained all of us to be palliative care physicians and there may be sort of, you know, you could have an elite level of palliative care specialist, kind of like the renal intensivist. So you know, you might have the palliative care specialist who just knows how to run ketamine infusions or something, but I think all of us need to know how to do basic palliative care because without that, I don't think we can serve the tremendous number of patients who need our help. And with that, I end. Thank you very much for listening. Do payers, do payers recognize the importance of what you said, public payers and private payers, and are they paying for palliative care the way they're paying, let's say, for procedural care? So palliative care is absolutely free. There is no cost involved, just like all the other things in the government healthcare system, so it's not a question of payment. That's not a barrier to accessing palliative care. No, I didn't mean that. I meant, are they investing a kind of money in palliative care that's being invested in other therapy? Right, so increasingly, it's sort of inching up, but I think it's just not a sexy thing to invest money. I think that's the bottom line. Ministers love nothing more than cutting the ribbon to a new MRI machine, and you will see that they are the newest radiotherapy machine that costs $200 million or something, whatever, whatever the figure is. Now, the palliative care money comes in drips and drabs, it's small, it'll happen at some small event somewhere in suburbia, so it just doesn't have the same kind of visibility, except when you talk to politicians whose own family has died and they realize the importance of this, but as I said in my talk, it seems to be invisible until you need it. Thank you for the wonderful talk, Dr. Shrestafa. My name is Dr. Charles Ray, I'm a palliative care physician here at the University of Chicago, and I had one quick question about what is involved in the training of palliative care physicians in Australia. Here in the United States, it is currently a fellowship program, and one of the issues we're experiencing is right now at a time where palliative care, at least in theory, is making a resurgence in terms of popularity. We're facing a shortfall of certified palliative care physicians at a time where we were avidly advertising its benefits, and I was wondering what the training process is like in Australia. Good question. So it was about seven years ago now that palliative care was recognized as its own specialty, and we have a fellowship program, much as you do in oncology or respiratory medicine or whatever, so it's a fully accredited training program. One of the problems, and I'd be interested to hear whether you face this here too, is I think the wider medical profession still doesn't quite get specializing in palliative care because a lot of people think that they can do it. And so palliative care physicians face this dilemma of needing to do something else, and often they're marrying their program with oncology, and then oncology kind of takes over a lot of people's lives, and palliative care tends to drift away. The other problem is that as a palliative care physician, you can't work anywhere but in a hospital. We don't really have a private system as such, so job opportunities are quite limited. Hence, that limits the number of people you can take into a residency program because these people are not getting jobs. No, no, it's linked into the hospice system, both community and hospital, but at the end of the training program, when you become a physician, there are just not enough spots because there are not enough hospices. There's not enough investment in palliative care, so where do these people work? Hi, thanks for that talk. I was interested in your comments about communication and patients actually being happier when they were not getting the truth. And it reminds me of last week, we had a tough case in a case conference. We had someone from patient relations who was saying, you know, your job as physicians is to make the patient happy. And so I think there are lots of different sort of influences that are sort of driving care in the hospital in terms of what is our goal here. You know, we have a much more privatized system here than you do in Australia, but I think there are a lot of overlaps. And I think even with the Medicare system there, which coincidentally is what we call our government sponsored insurance, so it must have come afterwards, right, is based on basically a fee-for-service model in which doctors are basically working as if they were private practitioners for the most part, but the payer isn't the patient anymore, the payer is the government. So I wonder how do you reconcile these different forces? I mean, what is the goal here in terms of the communication or the care in general? If we want to make people happy, maybe we shouldn't be telling them the truth. Yeah, I mean, you know, that's a really good question. So one thing I reflect on is that in the parallel private system, you do have a financial incentive to keep your patients coming back to you, but in the public system, you don't. It's, you know, there is no such incentive. I don't get, I get a salary. I'm a salaried medical officer. You know, the government pays my salary. So kind of, I don't understand why communication isn't sort of more on top of people's mind when they know that they won't be punished for it in the same way, at least financially, you know. And so I think, and from all the workshops that I teach, there just seems to be a lot of reluctance in letting go, in letting go of interventions and technology and being able to say that maybe we have reached the end of the line in terms of interventions. It doesn't mean that we can't palliate someone properly, but somebody ultimately has to say, there is nothing else we can give you that has a good benefit. I mean, the other thing, just tracking back for a minute, as an oncologist, I rarely have to say there is nothing else because there is. There's always something. So the question is, it didn't used to be like that, but now it is. I mean, if all else fails, there are clinical trials going around all over the place. People fly to the States now. People just pick up and seek care here, for example. So I think that that conversation, I guess we need to reconcile ourselves to having that conversation at some point and identifying when the right moment is to have it. And what troubles me about a public system is when we don't even have the financial incentive to say, if this patient doesn't come back, we will lose money. It should be a little bit easier to do right by the patient, but I'm not sure that it is. Don't know why. I enjoyed your talk as well. I agree that communication is the issue. And I would love to see what you try to figure out as to how to get physicians to communicate these issues. My father died last summer. I had multiple conversations with multiple ones of his physicians who I was encouraging them to discuss palliative care with my mother and my brother and sister-in-law who were there and mom would always come out and say, no, we didn't get there. And I'm like, and I finally lost it on some poor hospitalist who had cared for my father for exactly 18 hours. And he happened to also be a palliative care physician and he said, so you really, you just want palliative care. And I said, yes. And I don't understand why it has, and so he made it happen, but I lost it on him and that wasn't okay either. And it's, you know, he had multiple, and so it is, it's how do you get those physicians to really have that discussion? And I don't know quite how to do it. And you know, and I admit my brother and sister-in-law weren't quite there, but somebody needed to have that conversation. And it just never, and it was hard to get people to do it even though I could have the conversation with them that fundamentally that's where my father needed to be, but nobody else wanted to hear it. Sounds awful. The death ended up being very nice, but I lost it on some poor hospitalist who were left. One thing, I don't know whether you experienced it, but one thing I commonly observe is that when it comes to palliative care, you only need one dissenting voice for everyone to step back. It doesn't happen in any other part of medicine where people are very happy to argue their case. And you know, if the surgeon wants to operate, then they probably will get to operate or if someone says, you know, we'll give chemotherapy, it happens. But with palliative care, you just need that one doctor in this multi-specialist brew that treats a patient or one family member to dissent. And it's like everyone steps back and they don't go there. That's a problem unique to death and dying, I find. Yes, you're a mentor to motion. So my question sort of picks up off this communication thread. And I noticed that this is, I apologize, I'm not a medic, I'm sorry if it sounds really strange. But your slide where you talked about communication skills, training, and then suddenly the result of that, which is that actually there was not too much of a result. It's not quite that kind of thing. Yeah. And I think there's quite a bit of a disconnect because I can go to a workshop which teaches me Croatian, but whether I speak Croatian outside of that workshop is a totally different matter. And so I think one can come up with ways by which you can have communication skills workshops. But I think there must also be a way to see whether that is implemented. And I'm just wondering are there ways, is there a framework to assess implementation before one can come up with a statement like this doesn't work? That's a really good question coming from a scientific mind I can see. So there are two issues. Firstly, I think implementation of how a communication skills program works. I mean, I argue with my executive all the time about this because they want a strict metric such as X number of people got elective surgery because we opened up 10 new beds this month. It's something measurable. We bought a new MRI scan and 2,000 more people got an MRI. Whereas measuring a doctor's expression of empathy, conflict resolution, negotiation, they're a little bit more difficult to measure and it's kind of like effecting a culture change rather than something you can measure numerically. I think people have difficulty with that because the results may not be instantaneous. The other thing that I see from a practical point of view having taught residents and fellows in my workshops is I work with them on the ward and I think, hang on, you did really well in the workshop. What happens now? Why aren't you using these skills? Because they don't see other people doing it and so they go back and they think, well, no one else seems to be discussing whether resuscitation is important or no one else seems to be discussing resuscitation with the COPD patient. Well, maybe they're right and I shouldn't do it either because after all, I'm just the resident, I'm just the fellow and it's impossible to get senior clinicians to come to these workshops. I mean, it's like a stigma. Nobody will come to these workshops because they all think they know it. So we have a big disconnect between the people who are being taught, they're not really in positions of power or influence and my fear is that the more this goes on, we just end up getting these people to just join everyone else who hasn't done this either. So my question follows up on the theme so that the prior three or so, that in the first part of your talk, when you're talking about barriers, you probably spent over half the time talking about systematic barriers. When you came to the solutions part, you spent almost all the time talking about communication skills training, which I would argue is extremely helpful, maybe essential, but not sufficient. So I'm wondering if you can explain a little bit more about what some of the systematic solutions I think I may be addressing what people have been raising about. Well, the training itself is not being implemented and so what are the systematic solutions you have then to increase the likelihood that people would actually use this communications training? I'm sorry, can you repeat the last part of your question? I guess it's the argument that education alone is not enough and it's essential in a necessary step, but additional systematic processes probably have to be put into place to make it more likely that people actually use the communication skills that they will have developed. So what are some of the systematic solutions that perhaps you have in your mind but you didn't share with us during the talk here? I mean, I actually quite like, and this is quite early, but what the Australian government or the Victorian government, my state government is talking about credentialing people and I think that's, it has to be a carrot-scent stick approach because I really don't think that saying to people, come to these workshops, learn these skills, they're important no matter what kind of a doctor you are or a nurse you are, doesn't seem to be working as I explained. So I think credentialing may be one way, to say that as part of your CME or as part of being credentialed by a hospital, you need to have attended workshops that are relevant to your area. I guess that goes back to your education. I think funding is another issue. I mean, if you have more hospices, if you have more palliative care doctors and nurses and they are a different breed, I mean, I always encourage my residents to go and sit in a family meeting that is held with a palliative care physician or a palliative care nurse. They're very different to the meetings that other people have with patients. So I think once again, I think a lot of it ties into education in some way but currently resources are an issue, funding is an issue, so we don't see many visible palliative care doctors and nurses as opposed to all the other kinds of physicians we have. I think from a community perspective, I feel that healthy literacy is a big problem. There's a very low level of health literacy both here and also in Australia. So to debunk some of those myths about palliative care, you know, the typical things that you hear because people are giving up, because they want, and you know, people have said to me, well, is it because we can't pay, although payment is not even an issue, stuff like that. So I think keeping talking to an audience and engaging an audience and just as you have stories about, you know, the miracle robot machine that took out someone's brain tumor, having good stories about how palliative care made a difference to someone's life and the life of survivors. So there's also a lot of stigma that needs to be removed from palliative care and end of life care because the people who talk it down are usually people who haven't come into contact with it. I think those are some ways in which we could move forward. Hi, thank you very much. I thought it was a wonderful conversation you've provided us. I have one really focused question. You talked before about the right of one voice to dissent in the conversation. And I'm curious to know why you think in end of life discussions or in palliative care discussions, we've gotten to the point where a single veto has power over all other opinions. Why in this area of our lives do we allow one veto to win? That's a great question. And I think it goes back to the fact that anyone who chooses to have this conversation, and I mean any physician who goes into this conversation never does it with 100% confidence because we are beset by doubt. As an oncologist, I know that I have given someone a short prognosis and it certainly happens once in five years, but they've come back to me and said, you gave me three months and here I am. It's been six months and you were wrong. And they're so victorious about it. And although you are happy, you kind of go, maybe I should just be more careful next time. And I think that kind of an outlier event which happens to all of us at some point where we get something wrong. You know, you palliate a patient and I have had one occasion in my lifetime where I can't remember exactly why, but we ended up taking down the morphine infusion and the patient lived. This patient was being palliated. And it kind of just burns in your memory and you think, who am I to know? Am I doing this right? And so more than anywhere else, I think in these end of life conversations, you need the support of your team. You need the support of the cast in order to do it well, in order for people to back you. And what I have found is that in my own practice, sometimes it doesn't necessarily come from the physicians, but it comes from a nurse who says, oh, you're doing absolutely the right thing. You know, I've looked after this man five days in a row. He's ready to go. You know, he doesn't want this anymore. He's in pain or whatever it is. Or he wants to have this conversation about prognosis, but his family doesn't. But I can tell you that he asks me every day when I'm giving him a shower. So it's kind of, I feel it's really difficult to weigh all those views. And that's why I think when you hear a dissenting voice, the little voice in your own mind kind of amplifies and you go, well, maybe we should just roll back off. But I think these conversations do need to have a lot of sort of the courage of one's conviction. And mostly I think the need to communicate or the urge to communicate with a patient is right. You may not feel confident, I guess, giving a prognosis, but it doesn't mean that we shouldn't enter into a conversation about goals of care. And I'd like to see that happen a lot more. I was struck by what you said about palliative care doctors may be a different breed. And if so, education and communication skills is not the way to increase the number of palliative care doctors because they're a different breed and you're not gonna convert curative doctors into palliative doctors. I don't know whether you could probably not do a wholesale conversion, but I don't know that you need every doctor to be a full-fledged palliative care doctor. What I would ideally like to see, for example, is our best surgeon who clearly identifies because he tells me in a meeting privately that something is incurable, that the disease looks horrible, that when he went in, the tumor was matted all over. But then comes out and says to the patient, you know, well, we got most of it out or something like that. I mean, it's a bit of a cliche, but I would like the surgeon to be able to say, things don't look as good as I thought initially. I'm happy to talk to you about what I know, but I'm happy to summon someone who can do it better. Let me get you some physicians or palliative care nurses, doctors, whoever it is. I don't think we all need to possess the same set of skills. I mean, I can't operate. I'm very happy to say to someone, I think you need surgery. Let me find you an expert. But I think that would be a nice move for physicians who can't discuss these things openly to at least be able to say, to acknowledge, you need to have this conversation. I may not be the best person to do it, but it shouldn't deprive you of having it.