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Palliative care – better outcomes for everyone
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So welcome to everyone. And this first webinar for our group is to look at palliative care and better outcomes for everyone. I'm Peter Grant. I'm a gynecologist from Melbourne in Australia. And I'm very honored to be vice chair of the IGCS Education Palliative Care Working Group. And Raimundo is the big boss here. He's been on this committee for some time. So I would like Dr. Correa to introduce himself. He knows more about the workings of IGCS and palliative care than I do. Welcome, Raimundo. Thank you very much, Peter. Just to say that I am not the big person here. I am your co-chair of the IGCS Palliative Working Group. I am so grateful to have this webinar this morning. I am convinced that we should keep disseminating the concept of palliative care and to promote palliative care for all patients with advanced malignancies. I just want to say good morning for everybody. I am in South America in Chile right now. I know that there are people from many places of the world. As you know, I am Raymundo Correa. I am from Chile. I am a gynecologist and palliative care specialist. I do work here in my country in both areas, palliative care and gynecologic oncology. Thank you very much. I hope you enjoyed this webinar. I hope to see most of you in Korea in a couple of weeks. I need to unmute myself all the time, but I have remembered. Thank you very much, Raymundo. We are really pleased and excited to have two members of the workgroup join us today to share palliative care principles, information on care in low and middle income communities, and developing palliative care programs and teams. I would like these people to introduce themselves. Tell us a little bit about yourself. Dr. A. K. Goodman is our first speaker. Please, A. K., tell us a bit about what you're going to do. We'd like to thank you in advance for sharing your time with us. Thank you so much. It's actually profoundly moving to be here. I think about, hello, whoever's out there in the world and where we've come in terms of technology to allow ourselves to reach out to each other and teach each other things. I work in Boston. I live in Boston and I work at Mass General Hospital. I'm a gynecologic oncologist. My journey along trying to learn about palliative care and do what I can to educate myself and then teach other people started maybe, oh gosh, maybe 25 years ago or so, where I did a fellowship there. I see it as part of total care for taking care of anybody. I look forward to at least reflecting with y'all about what are our challenges? How do we define the issues? What are our potential solutions? Thank you so much for having me. Shall I popcorn to Dr. Anissa Maburu? Yeah. Thank you. Our other speaker tonight is Dr. Anissa Maburu. It's tonight, Melbourne time. It's morning for most of you, I think. I'd like Anissa to just say hello and tell us a bit about herself and then we'll get on with some talks. Thank you, Dr. Grant and Dr. Correa for having me. I'm deeply humbled to be part of this society and in this webinar. I'm a gynecologic oncologist based in Mombasa, Kenya. It's actually 2 p.m. here, very hot, it's about 30 degrees Celsius, so we're really enjoying summer. For me, being an IGCS graduated fellow and that's how I came to learn a lot of factors on palliative care. It was one of the things that I always ran away from because I couldn't have the conversations. I couldn't bring myself to speak to these patients, but based on all the interaction that I did with Dr. Pearl and IGCS, it really made me become a palliative care enthusiast, so I'm really happy to be here to share everything that I've learned today. Thank you. Thank you. Now, just before we get started, a couple of housekeeping items. A recording of this webinar will be available on the IGCS Education 360 Learning Portal within the next 24 hours or one business day. We'd ask if you could submit questions via the Q&A feature at the bottom of your screen, and we'll do our best to get through as many questions as we can at the end of the talks. So, that's enough from me. I'll pass on to Dr. Kriya and let you run the webinar. Again, thank you very much, Peter. It's a real pleasure to be here this morning for me and also to co-chair this working group with you during the last year. Let me Basically, my presentation this morning is quite short. It's a sort of introduction of what we have been doing during the last few years, probably since the last five, six years or so. The IGCS Working Group started in early 2018. I co-chaired this working group with Michael Pearl until early this year when Michael assumed more responsibilities within the society. And Peter started his chairmanship in parallel with me. And since then, we have been doing many things. I really need to thank many people this morning because this is not a work of the chairmans only. It's a team work, but I need many minutes and many slides to thank everybody. But I want to resume in two people. Both, I don't have the picture. Oh, I don't have nothing to disclose. And here, I want to resume in two people. Michael Quinn was IGCS president between 2016 and 2018. And Keishi Fujiwara is the current president of IGCS. And during both presidencies, both were very committed to develop and promote the concept of palliative care. So instead, I should thank many people. I wanted to resume in Michael and Keishi for their passion and the commitment to develop palliative care. Also, I want to say that in this year's Seoul meeting, the presidential plenary will be focused in health-related suffering and palliative care with a great and very important guest speaker in this area. As an introduction, all of us know, and I want to make sure that all people who are listening to this webinar this morning understand that palliative care is not an end of life or hospice care only. It has a new concept. It is continuing care. It is a multidisciplinary and comprehensive approach. And at the end of the day, it represents a human right for all patients with incurable disease, oncological and non-oncological of origin. And patients with metastatic and advanced gynecological malignancies are not the exception. And the other concept that I always say, and I repeat many times, is that the fact that this is, we are not asking physicians or health care providers to refer people for palliative care. We are asking teams, we are asking oncological teams to integrate palliative care into the care of each patient. In 2018, ITCS conducted a members survey and we included some questions about palliative care. And results showed that members didn't have much education and training in this area. And they were interested in have some sort of education. Also, we can see that there is inequity beside this survey. We also see that there is inequity in access and lack of education of palliative care, not only in the society, but also in all places. And there is also huge difference in access to different medications for different areas. So based on this information, we developed the ITCS palliative care curriculum version one. We launched this in the BITRON meeting in 2020. It was composed by nine chapters, nine modules with different topics. And I will be presenting the results of the survey for all people who have completed this curriculum in Seoul. So I am not allowed to present, to show you all results, but I will show few of them. And finally, I want to highlight the ITCS commitment to palliative care. Most of you know that last Saturday, there was released the ITCS declaration for palliative care. And also in the upcoming Seoul meeting, we will have the call to action. So I just want to reinforce the importance for palliative care and the responsibility of the society for promote and disseminate the concept of palliative care. So in this slide, I want to show that regardless the place where you work, there is an interest for training, an interest for increase the skills in the area of palliative care. You can see here in the left hand side in the world map, but also according to the World Bank Economic Classification, there is a comparable interest among different countries. Here, I don't want you to, I am not asking you to read the declaration, but I think it is very important for you to know the declaration. And I really invite you to go to the ITCS webpage, itcs.org to read and to download this declaration. Finally, I just want to highlight the importance of palliative care really represents a real need for all patients with incurable disease. Palliative care with gyne malignancies are not the exception. And as I said, I can't show the results, but IGCS palliative care curriculums seems to be a real reliable education tool and our commitment for continuing education. And what does imply? Well, first of all, the IGCS declaration, and it was released in purpose last Saturday because it was the World Day Palliative and Hospice Care Day. Also, the IGCS call to action and soul meeting. We will launch the palliative care global curriculum version two. We are organizing and we are having frequent activities such as this webinar today. I am ending my chairmanship this year, but IGCS working group, I'm sure it will continue working. And other thing that we want to have and to promote is free access for all palliative care activities that for those members coming from low, middle and income countries. Just to finish, I want to highlight the picture, the slogan for this year's World Hospice and Palliative Care Day. It was compassionate communities, but for me, most importantly, together for palliative care. This is a teamwork, a team effort, and we need everybody in order to continue promoting and working for palliative care among the society and for all patients in the world. Thank you very much. And again, thank you, Peter, and thank you, Anissa, and thank you, EK. Thank you, everybody. Thank you. Thank you, Raimundo. Now, I think it's time for some education and it's over to EK Goodman, if you wouldn't mind teaching us. Thank you. Thank you so much. First of all, Dr. Raimundo, thank you. That was awesome. Thank you. And really visionary. All of y'all are so visionary. Okay, I'm gonna share my screen. So here we go. Okay. And now I'm going to try and see my screen. Okay. So I appreciate being here and I'm going to focus on some health challenges. Just move this here. I have no disclosures. I do do some disaster work and that's me in Mexico in a clinic. I wanted to sort of focus a little bit on things that have been touched on very importantly, the issue of pain management, the management of suffering, and then a little bit of definitions of palliative care. Many of you are very familiar with this. And then do a bit of a spotlight on Bangladesh where I've been working for the past 15 years, helping with infrastructure development for cancer care for women. And then talk about what do we do for solutions and stuff like that. So we'll kind of go along and start with this very compelling paper out of Vietnam, looking at what is the issue with the problem with pain in people suffering from advanced illness. This quote here about, I wish I could die so I wouldn't be in pain. Very, very heart rending. And Dr. Pham, I interviewed 60 people, cancer patients, people living with HIV AIDS, and also with their care providers and really, really brought out how pain is the thing impacting lives that you can't get past that. And in addition to the effect on the individual suffering from pain, there's a tremendous amount of pain and suffering, just existential pain in the care providers. So those are very important things to keep in mind, the pain of the patient and the pain of their family and friends. And as Dr. Ramundo so well commented on, the issue of this being really a human right. Margaret Somerville gives this beautiful quote about there are concepts of ethic of care and human ethics, human rights and responsibilities more important than in the relation of human dying. And that this is negligence when we have a failure to intervene in this manner or included in our care. So if we sort of look, this is sort of what I could find data from the last year worldwide from World Health Organization, more than 61 million people died, many from malignant disease, many from COVID and many more suffer chronically from many multi-organ issues, cardiac, respiratory, renal failure. And at least two thirds, I suspect way more than that would benefit from the incorporation of palliative care into the care that they receive. So those are important facts. And the additional fact is that close to 80% of the population of the world live in places that are under-resourced. And in these regions, their ability to have access to appropriate pain management is very, very compromised. The statistic is that they, of all the consumption of opioids for pain relief, basically only about 13% of those who consume it are in countries that are under-resourced in low and middle income countries. So there's this disparity of narcotic drugs that also challenges the ability to do palliative care and also kind of outlines one of the disparities of care between high-income countries and low-income countries. So really the majority of countries who have availability are the high-income countries. This is a recent study that I thought was pretty interesting looking at the global consumption of prescription opioid analgesics. So I'm not talking about the opioid epidemic and sort of substance use disorders, but just the use of this for pain. And one of the interesting things about this top picture, which is this world map, is that over the past decade, there has been a reduction in opioid consumption rates in high-income countries, especially in North America. And I think this is a direct response to trying to manage the tremendous opioid epidemic. We are having huge amounts of deaths from narcotic opioids. Not our talk today, but in the lower plot, you sort of probably have trouble reading it, but it'll be recorded, of course. You see the countries that can consume opioids, and the first ones are all Europe and North America, and then the ones that can't are in the global south. This is an older graph looking at morphine consumption going up to 2008, showing the difference between high-income countries and the consumption rate you see was rising at that time compared to those in middle and low-income countries. This is a more recent piece of data up to 2019, showing a slower rate of that consumption as I talked about in high-income countries, but still so much higher than what's available in low-income countries. This Human Rights Watch study was put out a decade ago, and I looked and couldn't find a more updated version, so just take that where we hope we've had a little bit of improvement in the past decade, but in a survey of 40 countries, in 14, there were no pain meds available, and in 13 countries, only enough consumption for one person, and again, the countries impacted by this deficit were in the global south. So also when we look at national infrastructure around healthcare, very few countries have national palliative care policies. I think one of the moves that Raimundo was talking about is to bring this to the forefront as a society and IGCS to have these policies in place. In addition, many countries have restrictive regulation for fear of drug trafficking and drug trade and so forth. Having said that, we are seeing an improvement in care in multiple countries, such as Uganda and Vietnam, various other countries, so that's sort of my background intro into sort of thinking about palliative care. So the principles are improve the quality of life for both patients and families. It's global, it's collective. A family does not exist in, I mean, a patient does not exist in isolation, and we want to prevent and relieve suffering, both physical and psychosocial and existential and spiritual. So we want this to be an integral part of comprehensive care. So it should be part of the continuum of care, especially in life-limiting and life-threatening disease from the time of diagnosis to hopefully remission, but also the time of death. Okay, and again, to support both the patient and their family and care takers. So this is sort of our conceptual model that's been around now for several decades, but just to include palliative care, this is the sort of lighter green triangle, from the beginning of diagnosis while curative therapies are undergoing, surgery, chemotherapy, radiation, and then to increase and expand that care as less therapeutic options are available or as there's been a shift towards best supportive care and hospice care. And then finally, just to point out, the care doesn't stop with the death of the patient because the family members are still in need. And if there are the resources to give bereavement care, that should be part of the package. We have many tools. So we think about in palliative care and with this particular little graph, you can sort of think about where we can try to improve care, where we can think about education and increasing resource. So we can deal with some physical symptoms, we can deal with the issue of what is someone's function? What is their performance status? We can think about their spiritual existential distress. What's the sort of social issues? Are they getting enough food? Do they have housing, shelter? What are the other issues that are important as providers of healthcare to think about? And finally, again, the family. So kind of when we think about palliative care, we also think about being sure we understand what it is that's the experience of our patient. And this particular assessment system, which I've listed here, the symptoms of pain, fatigue, nausea, depression, these are all part of what needs to be analyzed and documented and thought about in terms of intervention in palliative care as part of comprehensive care. To do that requires infrastructure and infrastructure is expensive. There is infrastructure from, do you have a hospital? How many beds do you have? How many people do you have per bed? Do you have nursing? Is there the availability of doing nursing at home like home visits, or is that not available in a particular society? What's your pharmacy needs? Do you have pharmacy? Do you have the ability to give chemotherapy, the ability to give narcotics? What are your deficits and restrictions and what do you have available social services? And then lots and lots of interesting and very life-enhancing technologies that are very high tech that require a lot of resources, whether they're simple surgical interventions, such as paracentesis, putting on a Plorex catheter, a little bit more complex like a gastrostomy tube, nerve blocks, IR, other interventions and so forth. So lots of stuff that goes into infrastructure and we haven't even talked about here, the infrastructure of society that brings this to the forefront. So what are the barriers? Well, there's a lack of awareness. I think it's getting better, but of course I live in my little windowless silo in Boston. So sometimes I think it's better, but maybe it's just better in Boston. So that's where we need to do these assessments around the world. So lack of understanding by policymakers. There's also very significant cultural and social barriers. There could be beliefs about death and dying that may make it harder to have conversation in different cultures. There may be misconceptions about palliative care means that it means basically alleviating suffering. It's not just about hospice, the last week of life. And then very big misconceptions about pain management that leads to restrictions. So those are our challenges. So we need a knowledge base that we need to work on among providers of care. We need to have the ability to have follow-up. It's not just one visit. We need to manage symptoms like pain and symptoms at the end of life. We need to have communication skills and we need infrastructure. So those are all our issues. So in terms of thinking about a country that I have been so privileged to work in over the past 15 years is Bangladesh. Just to take a look in Bangladesh, a rising economic force in the world, but has gone from being a low middle income country now to a middle income country due to their tremendous drive and so forth. But they still have a lot of infrastructure challenges and palliative care in Bangladesh, while it is a specialty that's slowly, slowly developing is still very much not available to most people. So can you take models from Boston or from Melbourne and bring them to places, like this is a picture of one of the city hospitals, a huge filled place where you have not enough nursing where basically the family members are doing the nursing care and so forth. So what are the challenges? Well, you have the issue of late disease presentation in the majority of women with cervical cancer who die of cervical cancer. In Bangladesh, part of that is just, it's a big country. There's so many people, there's a lot of poverty. There's no universal healthcare. So you don't have healthcare insurance. You can either pay out of pocket, which you do if you're wealthy, or you go to a government hospital. There's poor availability of some of the main core resources for therapy. And there's a very big absence of opioids and there's a very big absence of opioids due to big regulatory issues, and also a lot of ignorance and fear even among providers to deliver opioids. This was a lovely study by Dr. Dalla, Romana Dalla, who's one of the early palliative care specialists of Bangladesh. She interviewed over close to 600 patients with advanced cancer and noted and put on the map that in two thirds of them to actually even higher, close to 70% maximum pain scores. This was their issue. They had untreated pain. The other issue, and I struggle with this as from the global North and what's my understanding of other cultures and language and religions, is what does it mean to have a good death in Bangladesh compared to in Boston? You know, we have various views, depending on how we're raised and just seeing. So there's definitely, it's tricky to deliver bad news or you deliver bad news, but you only deliver it to the family. You're not allowed to deliver it to the patient because it's thought that that would enhacen their death. So there's a lot of these challenges. How do you even have a conversation about this stuff? So interesting study from actually 2014, so getting a little older that looked at perspectives in South and East Asia, looking at what were the cultural just in themselves. So there's a lot of physician paternalism making choices without asking. Family involvement of decision-making where that's taken away from the patient. Reluctance to provide information as they talked. And then background ethics in different profound religious traditions that are really important to understand to know how to navigate these conversations. So the needs, we need hospice care. We need trained physicians. We need access to meds. We need education about how to do symptom control. There's the issue of financial support. There isn't healthcare insurance and that is a big tiebreaker. There are people who sell their family farm to get chemotherapy for their mother. So that puts the whole family at economic risk, right? Lots and lots of stuff like that. There's lots of amazing visionaries in Bangladesh that I've been privileged to work with. This is a picture of some of my colleagues at BSMMU, which is a graduate hospital in Attaka, Bangladesh. And Dr. Nezam who's there off to the, what is that? The right of the picture, who really started a palliative care training program and a small palliative care unit there. And now does palliative care in the big city slums of Attaka, which make up more than a quarter of the city and has shown and published on the improvement of quality of life in these populations. So this is a graphic I'm almost done with thinking about these various pods of layers that we need to think about from the meta level of policy and public health and models of care. And then the whole societal stuff, cultural beliefs, education to give palliative care and then to look at outcomes. How do we measure? Are we being successful? So here's our sort of big graph of all that stuff. So key factors, palliative care is public health. It is about human rights. We need to mature these specialties around the world. It's a public health issue and very interesting. And maybe for another day, the discussion of the ethics of undertreatment and for us to think about that as we advocate for this very important thing. So our obligations are to develop policies and have equity to access to services and to make these services affordable and to provide palliative care at all levels and to provide education of providers and family. So education training, development of core guidelines and development of essential packages. So luckily we have great leaders in this field. One of whom is Dr. Eric Krakauer, who's done a lot of work around the world and worked in Vietnam and is a big mentor to many, many people and came out with the sort of essential packages for palliative care. With this, this is available to anyone for looking it up. And the medicines that are listed are affordable and inexpensive and talks about the basic training that's needed. There's templates out there that are being placed. So in conclusion, palliative care is a right. It's important to include it in the beginning to the end of the care that we give and that crucial first steps are provider education as we're doing today. So I wanna thank you for the opportunity to present and I look forward to Dr. Nisi's talk. Thank you so much. Thank you, Ake. I think we better get on to Nisi's talk now if that's all right and hear what Nisi has to say. And then if there's time for questions at the end, we'll certainly deal with those. Thank you. Thank you so much. I was really enjoying Dr. Anne Catherine's talk that I almost forgot that I was here to actually give a talk as well. So I'll just get right on to it. Dr. Goodman has really talked about the general aspects of palliative care. And I just want to zero in a little bit on palliative care in low and middle income countries. I have no disclosures. So briefly, I will look at a few definitions and perceptions, some access disparities, most of which Dr. Goodman has talked about, research and development in the LMIC system, the opportunities that are available to us. So in terms of definitions, I think we all understand now that palliative care is talking about holistic care for the patient, looking at the patient in totality, looking at their family, their psychosocial, physical and spiritual aspects. And this is aside from what we thought of only hospice care that has been the main definition of palliative care for the longest time. And the reason why we're talking about this today, especially from an LMIC perspective, is that we have a high burden of deaths that occur in LMICs. We have about 56 million annual deaths worldwide, with about 80% of that happening in developing countries. And some 5% of that are happening in LMICs and those patients that have benefited from palliative care. And as I was saying, historically in most of our countries, palliative care has been equated to either a luxury or it's an end of life for hospice care, or just the basic provision of analgesia. And these are some of the things that we really need to address. And main issues about the misconception, mispriorities that are associated with palliative care is that in LMICs, we have a lot of competing priorities. Not all of us have access to clean drinking water. Not all of us have access to regular meals. And again, our hospitals are full and lacking in essential medicines. And so when we look at all these factors that require a lot of funds, we need to prioritize where the money goes. And so it becomes, for most of the special needed policy makers, they will opt to look at other things that they prioritize the most important and leave or abandon palliative care. So continuing on with the misperceptions, one of the major things is the provision of basic analgesia that Dr. Goodman has really talked about. And for most LMICs, as long as the patient has been given basic analgesia, it's considered that they have received palliative care. And ironically, it's because of lack of access to opiates, most of the patients that will be given regular paracetamol or Tylenol and be considered to be given palliative care. At the same time, we also have a lot of cultural and religious beliefs such that this can inhibit the conversations we are able to have with patients and their families. For some patients, they believe that to talk about death is actually to court death, to invite death. And so it is not advisable to even bring up the topic of death. For others, if you're going to start discussing about advanced directives, talk about hospice care, these are things that you know what, I believe in the afterlife and for you to bring about all these technological advancements, you're going to inhibit my afterlife, my reincarnation. And so it becomes taboo to talk about death and dying and such like that, providers we are unable to talk about these important factors. At the same time, when you're talking about palliative care, there are many patients who will be very stoic. They will not, I want to admit to the pain that they're facing, they do not want to own up that they are going through any sort of suffering because they think that it will affect their family or caregivers worse, or the doctor will say, no, because you're in a lot of pain, that means you're sicker than you are. And so they will not report the suffering and they opt to suffer in silence. And that makes us miss the opportunity to provide for them the care that they need. Also, there's still a lot of paternalistic medicine in our MICs where the physician can take a liberal decision to not disclose pertinent information to either the patient or to the family. And sometimes the situation is the worst where the family does not want the patients to be involved. And if the patient is not involved, then we cannot provide the care that the patient needs. So moving on to access disparities, I'm not going to be able at this point, I think Dr. Goodman has really talked about the opiate dilemma where we're having exchange of access with high provision of morphine or other opiates in high-income countries like Haiti that only has five milligrams per patient in either periods of care according to the Lancet Commission report. It's, the situation can be quite dire in terms of access or lack of access for opiates, which is one of the main and obsessive-compulsive use in PC. But apart from just the uneven distribution, there are some things that contribute to this. And one of the main issues is the archaephobia, which we're talking about fear of the opiates, the side effects they might have and the doctrine of double effect that I'm taking away the pain, but I'm testing in death of the patients by causing respiratory compromise and such kind of balance that people fight with. And again, also most of our countries really prohibit opiate prescription and they will only want specific people to prescribe it who are far and in between, which makes access to opiates very, very difficult. And so when we talk about disparities in terms of access for palliative care, there's a lot of elements that we look at. And I'll briefly talk about just this culture of lack. We talk about lack of medicines, which I've alluded to, and not just the opiates, we're talking about drugs like antiemetics, antidepressants. They tend to be very expensive and most of our patients can't afford them. The same way with lack of funding, especially funding when patients have to choose between chemotherapy and analgesia, which one are they going to buy because their funds are very, very limited. Even in the hospitals, there's a lot of healthcare system failures where there's no provision of the services for the patients and there are no policies that guide how these patients can be managed. Sometimes you just don't have facilities. In fact, in Kenya in 2007, we only had 14 institutions that offered palliative care. Right now we have over 70, but still for a population of 43 million, that's still not enough. We've mentioned about technologies and if you don't even have the facilities, most of the technologies that help to ease the suffering of these patients may not be available, the same as human resource. In Kenya, we have five trained palliative care specialists, very few palliative care nurses, and even fewer who are aware or well-versed in the art or in the discipline of palliative care. We've also, I've also mentioned that based on the appropriate perceptions and sociocultural acceptance, we have a lot of patients who opt to go the herbal way or through traditional medicines, which might not be helpful to them. And by the time they're coming to the healthcare professionals, it's rather too late. And when you look at all these issues that we face in LMICs where palliative care is concerned, if you do not have governmental goodwill, then advancing any sort of care, any sort of progress in this field becomes next to impossible. So I'll switch gears a little bit to talk about research and development in LMICs, where when we're talking about the number of articles that are published based on palliative care in LMICs, I really liked this biometric analysis, which looked at about 835 references with 245 articles that were from LMICs. But when you look at articles that came from upper-middle-income countries, about 47% were from those upper-middle-income countries. But for low-income countries, only 11% publications came from these countries. And then when you look at the numbers of the first authors who were from an LMIC, it was about 17%, meaning that you have very few publications from LMICs, which is the key, which is some of the highest. We talked about the burden, where it's facing some of the highest challenges in terms of non-communicable disease and death that results from this. And we find that, ironically, a lot of publications in the upper-middle-income countries or high-income countries are studies that have been conducted in LMICs, but published in the upper-income countries. And so we wonder, what is happening to our research? What is happening in terms of our data getting out there? And this is just a graphical representation of what I'm talking about, the upper two charts. They're looking at the low-income economies and low-middle-income economies. And you can see the number of publications out of the LMICs are very low. But when you go to the high or upper-income countries, the trajectory is high. And apart from us having low publications, we also face the issue of the impact factor, such that most of the research that comes from LMICs are published in journals with very low impact factors or even no impact factor, while most of the upper-middle-income and high-income countries can publish in very good journals where they get a lot of international representation and publicity. Now, this part in terms of R&D means that we have a lot of restricted research capacity. Of course, most of the things that we're talking about, low funding, low human resources. And there's a term that was set forth by Trostle in 1992 of scientific colonialism. And this has been something that we face because we find that the themes selected from LMICs may not attract interest or even considered relevant by readers who do not work or do not interact with LMICs. Another factor when it comes to lack of international representation is that some of our authors, they prefer to publish in local journals where the native language is mostly used compared to English, which is the biggest language that is used in terms of publications. And this, again, not many people are, say, Spanish speakers or Portuguese speakers. And so in terms of international representation, LMIC research is on the low side. But it's not all doom and gloom. There are some opportunities as well as some ways to improve. And one of the main factors is the legal framework for piloted care legislation needs to be improved in our setup where we are creating a lot of policies and guidelines that manage how we care for these patients. And apart from all this legal framework, we also want to talk about incorporation of palliative care into the health system. Because when we have publicly funded public palliative care services, the patient does not have to pay out of pocket, which is what most patients are doing right now. And this serves to promote or catalyze poverty that these patients are already facing. Now, because we cannot only work alone, it is always good to have collaboration with the institutes in the high-income countries that already have the expertise and resources that can help train healthcare providers in LMICs. I'd like to highlight an example here in Kenya between the Indiana University and Moetichin and the Faro Hospital. We have a palliative care specialist from Indiana who's come and trained a palliative care person in Eldorette. And this has led to the creation of a program that is actually training palliative care specialists which will improve the human resource involved in PC. Apart from just North-South collaboration, we can have multilateral collaborations like public-private partnerships. This has been especially useful in terms of provision of medicines which are available in private hospitals but not in public facilities. And one other thing that has really taken root in LMICs are community-based services, particularly home-based care models where you have families and other volunteers who are trained in essential symptom management such that they're able to supplement the healthcare provided by the specialist or in specialist hospitals and such like backup and support that the patient is receiving. So for us to be able to move forward in terms of providing better palliative care, education and training has to be segmented into our policies. One of the main things is the legislation that requires all healthcare personnel to be trained in palliative care. And I'm proud to say that at least in Kenya, all undergraduate and postgraduate medical and nursing school require that the palliative care is integrated into the curriculum so that all graduates have at least a modicum of understanding of palliative care. And for those who do not have direct access to the PC curriculum in our countries, there's always exchange programs like the one I mentioned with Indiana University that Kenya has. And when you have this combination of local programs with international partnerships, then you actually see more healthcare professionals and volunteers who have the knowledge and skills to deliver palliative care. One of the biggest factors that we do face in our setup is the sociocultural influences. And we all as healthcare professionals, palliative care specialists, we have to understand every woman and the kind of sociocultural influences that she faces, because this will determine the kind of care that is acceptable to her, the kind of care that the family will be willing to have the woman go through. And this way, when you keep on researching and realize interventions that will help us circumvent the sociocultural barriers to palliative care in LMSCs. So the whole, in summary, one of the key strategies that I see for LMSCs to integrate palliative care into the health systems so that we can create publicly funded services for improved access for women. And hopefully we can palliate successfully and move forward and help our women have better or at least better lives despite all the problems that they're facing and we'll keep our hand on burning for all our women with cancers. Thank you very much. Thank you very much, Nisi. I'm sorry, I left you sitting there for a minute. Look, we've got very little time left, but I have a question, because at the moment there aren't any questions in the box here. Do you think that research publications in high-impact journals can act as a political economic lever for improved service to vision or funding in low and middle income countries? Thank you, Dr. Grant, for that very good question. And that is why I actually brought up the impact factor in journals, because you find that when you publish in such high-impact journals or journals with high impact factor, it improves visibility of what is happening in LMRCs, it improves chances of funding, as well as also improving visibility for partnerships, collaboration, and even when you apply for grants, you can be recognized as a good researcher and be able to get the grants to be able to promote care for these women. So I think it's a really important factor. Ramona? Yes. Well, it's not my question. Michael Perl wrote a question for AK, and it says, AK, given your experience in Bangladesh, do you have any recommendations for those in low, middle, and income countries with regards to working with their governmental agencies to develop palliative care programs, including access to opioids? It's a really great question. I would say I can't speak for other countries because each country is so complicated and their government system is so complicated. Bangladesh is a democracy, elected government. Having said that, it's a very complex, just going to put it out there, Kafkaesque environment to navigate. I have spent countless hours with the Ministry of Health and the Ministry of Nursing for various things over the years, mostly as part of a bigger group. We went in there once to try and promote HPV vaccination. Through GAVI, we had a representative from them and stuff like that. From a government level, what I see is that they have many, many competing political agendas. Currently, there is not the infrastructure beyond funding government hospitals to fund bigger healthcare packages. What ends up happening is there's these NGOs, the most famous is BROC, you may have heard of it, that really has put screening on the map and a lot of education on the map and vaccines on the map and so forth. It's probably through these Bangladeshi-run NGOs that you will get some traction. They, of course, have only limited funds. You need something that's a little bit more governmental. It's an interesting mix. The other thought I had, having had the opportunity to go over some time and watch the changes that I see economically, is there's this powerful, rising middle class of educated Bangladeshis who are passionate about their country and passionate to fix things. There are these really passionate conversations that are going on. Another way is to really work informationally through social media and through conventional news media to get the word out there. I suspect that's going to do it. My experience in Bangladesh is you do not tell them what to do. You ask how we can be helpful. Here are some issues. What do you think? Because the minute you say, here's what you should do, the door is just shut. It's important to let it be generated from within. Well, I think that's all the time we have today. I want to thank particularly A.K. and Nisi for their talks. They were just wonderful. But I also want to thank Ramundo and all the people behind the scenes at IGCS, particularly Ashley. This session will be available on the Education360 portal in the next 24 hours. I hope we can see you again at further webinars. We'll need feedback about what topics should be covered. Look after yourselves and stay healthy and safe. Thank you. Thank you very much. Thank you, Peter.
Video Summary
In this webinar, the focus is on palliative care and its importance in low and middle income countries (LMICs). Dr. Peter Grant and Dr. Raimundo Correa, both from the International Gynecologic Cancer Society (IGCS), introduce the topic and the need for palliative care education and training. Dr. A.K. Goodman discusses health challenges and disparities in access to palliative care, particularly in LMICs, as well as the importance of improving pain management and addressing suffering. Dr. Anissa Mabru highlights the definitions and perceptions of palliative care in LMICs, as well as the barriers and challenges faced in providing palliative care in these settings. She also discusses the need for research and development in LMICs and the opportunities for collaboration and improvement. The webinar emphasizes the importance of palliative care as a human right and the need for education, training, and integration of palliative care into the healthcare system in LMICs.
Keywords
palliative care
low and middle income countries
multidisciplinary approach
barriers to accessing palliative care
limited access to medications
limited infrastructure and resources
integration of palliative care
education and training for healthcare providers
research and development
LMICs
education and training
health challenges
pain management
barriers and challenges
collaboration
integration
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