Great, I've got that. So when I think about the issue of palliative care, I think about it, no disclosures. I think about it really very much the way I think about the very complicated care that we do taking care of people with cancer and women with cancer and our subspecialty, which is it's very complex with multiple moving parts. And to do superb care requires collaboration on the ground level with multiple experts. And part of your expert collaboration is with family. And it requires a knowledge base of reading the room and knowing what cultural and normative experiential issues are involved. And when you come to something like palliative care, it's the same issues and you need not only on the floor, on the ground, a need to collaborate and work together, but you also need a systems almost policy level to coordinate care. And as I think about it, and I feel like I'm, I didn't articulate this as well this summer when I gave this talk the first time, but as I was thinking about it in preparation tonight, I thought about it some more and I thought there's all these layers that we as a collaborative community of people who provide care for people with cancer need to deal with on a level of policy, on a meta level, on a societal level, on a level of education and personally on a clinical level. So there's all those issues. And I wanted to start with a nice paper I found that was published this year out of Vietnam with this very compelling title, I wish I could die so I would not be in pain, a qualitative study of palliative care needs among people with cancer or HIV AIDS in Vietnam and their caregivers. And I commend this paper to you to read in full, but I just have one slide on it, which I found really very moving and compelling, which is that they interviewed 60 people. And the point, the take home points was that pain severely impacted daily life. And that in addition to pain and other physical symptoms, psychological distress was huge and ranged from sadness, depression, to what I would call existential distress, a feeling of having no future. It's very profound feeling of having no future. And that in addition to the people experiencing the suffering, the caregivers experienced suffering, they experienced it physically, they experienced it psychosocially. And for these people in Vietnam who are suffering and their caregivers, spirituality and spiritual interventions was a source of strength. So I wanted to use that just to sort of anchor us as we sort of think about the systems issues going forward. So this is a wonderful quote about that nowhere in the concepts of ethic and care and human ethics and human rights and human responsibilities, it's important in the relation to human dying. And that one of our failures potentially is the failure to provide adequate pain relief at the end of life or in the passage of someone through their cancer. Now I don't know how you get these statistics, but here you go, worldwide, more than 60 million people died this past year. Maybe more than that, but from the WHO, 10 million of them died of malignant neoplasms and a whole bunch of million died of AIDS. And of course, we now have this whole new tragic group, 5 million plus dying of COVID this past year. And the point is that around the world, country to country to country, millions of people suffer terribly at the end of life from many life limiting and terminal events. And in our subspecialty suffer from cancer. And that so many of them would benefit if we had as part of our infrastructure in medical care, in our policies, in our education, and personally on a day to day level, managing that aspect of care. So this is a little bit of an old fact. I couldn't really find an upgrade, but I think it's kind of probably still true, which is that the majority of pain medication is consumed by Western Europe and North America. Yet the majority of people in developing countries consume less than 6% of narcotics. And that many countries around the world don't have any opioids at all. And even in countries that have opioids, they're going to be very regionally specific. So this is really addressing the issue of the needs around pain management. And this graph, of course, which is very compelling, looking at high income countries, which is the blue versus middle and low income countries in terms of morphine consumption over the years. So very compelling graph. And this is not to say that people in North America inappropriately receive pain management. They perhaps were privileged to get fairly good pain management at the end of life in many cases, but it's to say that in many parts of the world, that doesn't happen. Human Rights Watch actually did a survey of this and identified looking through 40 countries, analyzing the availability of the use of opioid consumption for pain control, found 14 countries where there were no pain meds consumed, eight countries where there wasn't even any reports about it, and as you see, 13 countries where there was enough morphine in that country for just one person, if you kind of did the math. The areas that were most impacted from this lack of resource were Sub-Saharan Africa, parts of Asia, and Central America. So there's also the other issue of policies at the governmental level that restrict the ability to manage pain by having very restricted regulations of morphine prescribing. The country that I have most familiarity with, which I'll talk about in a minute, is Bangladesh. I've been privileged to go there for the past 12 years working there until the last two years of pandemic where I haven't traveled there, but they have sort of at the government level restrictions really making physicians fearful to prescribe morphine, and that is another issue. There's also issues of minimal education on the part of educating nurses and doctors on pain management. Now, just a shout out to Vietnam. Vietnam is among the countries that have a comprehensive reform to improve access to palliative care. So go Vietnam that you guys have, and I wish we had the time to discuss this, but you have a good track record and have for years been working on policy. So when we think about the principles of palliative care, it's interventions to improve quality of life for patients and their family. It doesn't mean care you only give when you're dying, when you're at the end of your life. It's about preventing suffering and relief of suffering, and also dealing with the psychosocial and spiritual issues. Back to that paper out of Vietnam that showed that spiritual distress and existential distress were a huge part for both patients and their families that impacted them to the point where they wanted to die, they were in so much pain. So that's very, very, very heartbreaking and upsetting. So I'm sorry, I keep moving this around because I don't know what to do with the pictures on the side. Okay. You know what? I wonder if I can do this. Oh, look at that. Okay. So principles of palliative care and the framework of a continuum of care from the time of incurable disease is diagnosed to the end of life, and it affirms life, sees dying as a normal process, and it offers the support going forward. This is a very familiar two graphs I'm going to show you. The old palliative care model where you had diagnosis, you gave chemo, you did surgery, you did radiation, you did all this stuff, and then all of a sudden you put them on hospice in the last few months of their life, and that's when you started palliative care. And the new model being that you integrate the whole idea of best supportive care, pain management, managing existential distress from the beginning. I want to say from an editorial point of view that while I love this graph, I don't really see this happen in my day to day in so many patients that I get to take care of, and I think it's complicated why it doesn't happen. And again, we don't have the time to discuss that. I would love to hear from the group at MD Anderson about their experience, but while we'd like to do this, a lot of times it doesn't happen, and we're full force with chemo until all of a sudden we're talking about what we call goals of care. Now there's a lot of infrastructure in palliative care, and so I'm going to talk about that next. And we sort of think about physical symptoms, the social issues, the spiritual issues, managing the patient, dealing with functionality. One of it is assessing what it is that is going on with your patient. And so this is a assessment system of sort of a scoring of all the various physical symptoms that you'll look at, pain, fatigue, nausea, depression, and so forth. But getting back to infrastructure, which is again, a lot of what I think about, there is so much involved that makes palliative care, good palliative care, very expensive. I mean, there's the whole issue of where do you do it when someone's that ill? Is it home? Is it sort of a rehab? Is it a nursing home? Is it a hospital? And who is it that does it? Who do you have? What are the groups of people, nursing, physicians, pharmacy, all the various medications, all the technology with IVs and ports and drains and blocks and paracenteses, and then the whole issue of communication and the need to be better communicators. So there's this huge infrastructure that's involved. So here's our challenges. We need a knowledge base that's core, that we need to teach everyone in. We need to manage symptoms. We need to have a plan. We need to teach people how to do difficult conversations. And one of my big, big role models years ago, a psychiatrist, palliative care physician at Dana-Farber Cancer Institute used to say that, you know, there's all this training on doing a radical hysterectomy, but no one gets trained on doing a goals of care conversation, but that's as complex an intervention as doing a radical hysterectomy. So you need to teach it. You need to train for that. So I just wanted to just use those thoughts to talk about Bangladesh, a country that I've been blessed to learn about firsthand. I do not, I apologize to say, know the ins and outs of the challenges in Vietnam. And we have developed palliative care models in the West, in North America, in England, in Europe. So the question is, do these models work in a country such as Bangladesh, which is a rising economic force? It's a low middle income country, but has huge poverty, huge populations. And part of the challenges there is that people come in with late presentation to their disease. So the chance of curing them is much lower. There's sort of inadequate facilities. There's huge queues to get in for radiation. Also, it's very expensive. There's no universal healthcare, so you either pay out of pocket, you're wealthy enough to go to another country to get your care. You go to a private hospital, or you go to a government hospital that has very suboptimal and limited resources. And there's the absence of opioids. This is a study out of Bangladesh that looked at hundreds of women and men with cancer, advanced cancer. They were both Bangladeshi, they were also Nepali adults. And what they found was the average pain score in a scale of zero to 10 was always over five in the majority of patients. And the maximal pain score was over five. So pain was inadequately controlled. The other challenge, and this is my challenge as a North American, as an American in the United States, is I don't know what it means to someone in Bangladesh to die well. What is a good death? What does that look like? What does it matter from a religious point of view, from a cultural point of view? How do you talk to families and to loved ones about that? In many cultures, patients aren't told their diagnosis. It's part of the culture, the family takes those decisions on, and that labels can actually be very isolating and very traumatic. This is a challenge. And so it reminds me that you can't universalize language and interventions and how you talk to people. You have to know the culture and the context. So looking at a study at perspectives from South and East Asia, literature was reviewed on health and ethics in Bangladesh, in China, in India, in Pakistan, and there were a lot of different components that are very different than the West. The issue of paternalism among physicians was thought to be a good thing. Family involvement in decision-making was very key, and the reluctance to provide information to patients. And that a lot of other traditions, Islamic, Hindu, Confucian, Buddhist, really impact how language and communication is given. So very, very interesting stuff. So we have all these needs in Bangladesh, hospice, training physicians, access to meds, financial support, and so forth, shelter even. And I'll just end with saying that this picture is a group of amazing people that I've worked with who do palliative care and are building a palliative care unit. And there's in Dhaka, the big mega city of Bangladesh, there's huge slum-dwelling populations of very, very poor people. And this group has gone into the slums to train local lay traditional providers in palliative care to sort of assist in that area and improve quality of life. So it's pretty cool. I really feel like I'm running out of time, but this slide, which I'm not going to go through because it's really complicated, but it just is to my point of the need for all these different layers to get good care from government to policy to medical education. So you'll get that in the slide set. So the key factors are just this interconnection of disciplines in palliative care between the care you give, public health, even human rights, seeing medicating pain as a human right, and that this is sort of where we are with that. And that managing dying is a public health issue. That's a very interesting concept. We sure don't talk about that at Mass General. We just give pain medicine, right? But it is a public health issue. So we need to create and implement policies. We need to find out how to get access to services. We need to make medications accessible and affordable, provide provision. We need to do education. Okay. So I'm just going to finish with saying that Dr. Krakauer, who has worked a lot in Vietnam and is a palliative care specialist, has been involved in this essential package of palliative care. You can look it up on the internet, and it really gives you really detailed recommendations of interventions. It's really a wonderful resource that's free and that's out there. And so I'm just going to conclude to say the right to palliative care is important, and that there's a lot of policy that supports this on a very, very meta level like World Health, and that we need to educate our providers. So I'm just going to finish with that, but how do I stop sharing screen and just say thank you so much for letting me babble on for 15 minutes.

palliative care

collaboration

access to pain medication

challenges in developing countries

education of healthcare providers