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Palliative Care in Disaster and Conflict Settings ...
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Welcome. We start with our webinar today. I'm Peter Grant. I'm a gynaecologist from Melbourne, Australia, and I'm honoured to be co-chair of the IGS Education Committee. We have a really interesting talk today, great speakers. I'm joined by Dr. Anissi Mabiru, who I'll ask to introduce herself so people can know her. Hi, everyone. Thank you so much for joining us. My name is Anissi Mabiru. I'm a GYN oncologist based out of Agathon Hospital in Kenya. Before we get started, I just want to mention a few things, a few housekeeping items. This is going to be a recorded webinar, and it should be available on the IGS Education 360 Learning Portal within one day. We encourage you to submit any questions via the Q&A feature at the bottom of your screen, and we'll do our best to answer as many questions as possible in the time we have available. I'd like to now ask Dr. Mabiru to introduce our speakers and an outline of today's webinar, and particularly to thank AK Goodman, who suggested this topic. Thank you so much, Dr. Grant. We are joined today by three palliative care experts. First, we have Dr. Eric Krakauer, the Director of the Global Palliative Care Program and Associate Professor at Harvard Medical School in the United States. We also have Dr. Nakhla Ghaffar, a clinical oncologist and the head of the Palliative Care Unit of Khartoum Oncology Hospital in Sudan. And lastly, we have Dr. AK Goodman, a Professor of Obstetrics and Gynecology and Reproductive Biology at Harvard Medical School in the United States. Thank you all for joining us today and being so willing to share your expertise with IGCS global community. Now, before we get started, a quick overview of what you as the viewers can expect to learn during today's webinar. We will begin by setting the stage of the prevalence of suffering of women due to disasters and conflicts. Then Dr. Ghaffar will share information on how women suffer and the need for palliative care in humanitarian settings. Then Dr. Krakauer will provide information on the WHO essential package of palliative care and humanitarian response. And then Dr. Goodman will bring it home with her expertise on the role of GYN oncologists in these settings. We will then conclude our webinar with time for questions and with our panelists. And as Dr. Grant has mentioned, we encourage you to submit your questions via the Q&A feature at the bottom of your screen. And so now we will have Dr. AK Goodman set the stage. Welcome. Hi, everybody. It's a real honor and a privilege to be here. And I'm really excited to share and learn from our speakers. I have no disclosures. Next slide. Basically, I'm funded by some endowed funding. And I want to just briefly set the stage talking about humanitarian crises in general and the impact on women. Next slide, please. You know, if we think about the definition of a humanitarian crisis, this truly represents a critical threat beyond just a local fire or flood or something. It's something that really impacts a large community of people over a wide area. There can be man-made crises such as armed conflicts and political crises, climate-related disasters, which we're having more and more, and complex emergencies that have a combination of all these. Next slide, please. The definition includes sort of five major criteria, the scale, the urgency, the complexity, the lack of capacity to respond by the local community, and the risk of failure of effectively delivering care. Next slide, please. Now, just to focus a minute on the sad state of violence in the world, it's escalating. There's multiple ongoing armed conflicts around the world, and this is a recent conflict index of country rankings. Interestingly, Myanmar being at the highest level of violence to its people, followed by Syria, Palestine, Mexico, and Ukraine, and so forth. Next slide. The consequence of violence, the consequence of conflict, the consequence of natural disasters, is displacement, and displacement and loss. Women and children are impacted exceptionally. This graph by Dr. Ben David from The Lancet shows the sort of increasing displacement of women and children over the years as conflict continues. Next slide. We sort of talk about in the humanitarian sphere about sexual reproductive health as a module, a cluster, to focus on those issues related to women-centered health, and in crisis settings, this is women's health is severely impacted. In data suggesting all the millions of people needing medical aid and being displaced, about a quarter of them are women of reproductive age, and about 5 million of them are pregnant. In terms of the consequences and crises of pregnancy, for instance, maternal deaths, the majority occur in a place of fragility and conflict. Next slide, please. Women and girls are at increased risk in times of loss of governance, loss of boundaries, loss of community, and there's many reasons for that, the inability to protect from pregnancy, from sexually transmitted infections, lack of access to care, sexual violence, lack of security. Next slide, please. With the loss of infrastructure that Dr. Gaffer will talk about in great detail, there's lack of transportation in terms of maternal needs, you don't have a safe place to deliver, there's no comprehensive care, your community support systems have gone, and the gender inequalities of a particular society are profoundly amplified, and women and girls are among the most vulnerable. Next slide, please. So, you know, we think about these increased risks listed here, sexual violence and rape, trafficking, unintended pregnancy, I've talked about maternal death. Next slide, please. And maternal mortality, I realize we're oncologists here, but many of the women that we take care of are pregnant or were recently pregnant or are trying to get pregnant who happen to have cancers or pre-invasive disease. This maternal mortality rate is quite escalated, hemorrhage, injuries, homicide, and along with that, concurrently with that, newborn and child mortality is huge. Next slide, please. So, when we think about sexual and reproductive health, one of the things that's very neglected in the humanitarian space is the issue of women with gynecologic cancers. I'll talk a little bit more about my reflections on this at the end, but that needs to be included. We include it under noncommunicable diseases, but we should also include it in a lens on intervening with women, you know, with sexual and reproductive health. Next slide, please. So, in an emergency, there's acute and there's protracted. In an acute emergency where you've lost your infrastructure, you've lost essential services, our interventions as humanitarian providers is to try and replace that and help rebuild and restore essential services, and in the setting where it's an acute crisis, you will have a return to normality at some point. In a setting of protracted crisis, of which sadly there are many around the world, that return to normality does not exist, and these problems continue to be issues. Next slide, please. I think that sort of wraps up my introductory comments. I wanted to kind of segue into thinking about palliative care in the setting of all this loss and injury and the need for interventions to alleviate suffering, and also, which will be discussed by Dr. Krakow, the ability to identify and care for those who won't survive. So, with that, I want to turn it over, and thank you so much for allowing me to make some comments. Good morning and good afternoon. My name is Nahla Jafar. I'm a clinical oncologist. I've been working in Sudan as an oncologist for 14 years, and I'm very grateful to be with you today, and especially with International Gynecologic Cancer Society, and I'll be reflecting on the situation of women in Sudan, but it applies also to other humanitarian situations. Next, please. As you know, humanitarian crisis can be man-made, like fires or wars, and they can be also natural, like earthquakes, floods, and drought. But whatever the situation, I assure you, nobody can be prepared for such situations. In Khartoum, and after four days of continuous shooting and bombing, people were closed at home, and we decided to get out, and almost everybody left with few of their belongings, on the hope of returning after a week or two. Never thought that it's going to be long-term or forever. Next. This figure shows that more than nine million people have been displaced up to now from the war that started April 2023, and the red shows the conflict areas, and you can see that people have left to nearby countries, about two million, and others left to another province within the country, which is safer, almost seven million, but the suffering is huge for all, even for those who decided to remain in the conflict area. Next. Those who left, especially to other regions inside the country, faced the following. They faced loss of source of income, thus lack of food, and the need for shelter. They may have been injured during the conflict, or they lost their family members during the conflict, and in all cases, they moved to a new environment, and they need to accommodate for the losses that they are facing, and during such situations, women are particularly vulnerable. Next. Women might be subjected to sexual violence for such reasons. The most important one of them, I think, is the use of sexual violence as a weapon during war, especially to humiliate and intimidate the enemy. We already spoke about the effects of displacement, and another thing is the lack of laws during war, and so absence of retribution for crimes, allowing the continuation of the assault. We must not forget the gender power dynamics, and the feelings of stigma and shame, and that leads to, next, underreporting, a lot of underreporting for sexual assault. We have rape, we have gang rape, we even have abduction, and we have cases where young women are abducted to another part of the country, and their assaulters are waiting for them to give birth to the children, because they believe these children belong to them. In Sudan, we have still now about 120 cases of sexual assault, but the real figures might triple that number. Next. Aida, this young lady, she's a widow and a mother of three children, and she had to flee from her home in North Kortofan to Port Sudan, which is almost 900 kilometers away, and the trip took her about four days in order to reach a safe place with her relatives. Next. So, women during such journeys are very vulnerable, because number one, their position in the family, and where men are always the guardians, and they are in charge of the children, so they have more responsibilities and more expenses, time-consuming with the children, yet they have little authority. The law gives them little authority over their children, so a lady, if she wants to travel outside the country, she needs the permission of her husband to take the children with her, and unfortunately, women are usually less educated and, of course, have less income than men. Next. Humanitarian situations affect everybody, even health professionals. In this photo, this is my colleague. She is a nurse, and this is her photo when she reached a city in the north of Sudan, and you can see in her face the sadness and the feeling of helplessness after she arrived there. In fact, she has delayed her traveling outside of Kortofan for more than three months, and we were keeping calling her and sending her messages to get out. She was there, and she suffered during those three months lack of electricity, lack of water, lack of internet communication and telephones. So, to get electricity, sometimes she had to go 15-minute walk on a dangerous street to charge her mobile and then send the message. We kept asking her to evacuate, and she didn't until one day the militia, almost two men from militia, knocked on her door, and they took her in order to treat an injured soldier. Her husband accompanied her. They did the mission. They came back after three hours, but at last she decided to leave this dangerous city. Next. And patients. We should not forget our patients, all patients with non-communicable diseases, all patients who need continuous medication and continuous follow-up. They suffer from this lack of medications and the lack of health services, and in particular cancer patients, and in particular women with cancer. I kept receiving photos of patients showing me their local recurrences, and images of widespread metastasis. The patients, after they have been almost cured of the disease, they are astonished. That's why they send me these photos. They are astonished what to do, and they are in a situation where they cannot access any chemotherapy. Even in the cities where it is safe, still the patients are suffering. My colleagues working there, they report that there are more patients who are having more side effects from chemotherapy than previously, and I think that is due to the undernutrition and their status. Next. So what was the humanitarian response to such situations at the WHO and through its emergency department? And Prof. Eric will be explaining more about that. There is a plan or there is activity in order to secure access to essential medications. As for sexual violence, the UN Women and OCHA, which is the Office for the Coordination of Humanitarian Affairs, they are actively working in recording, in preventing, and in responding to sexual violence, together with state and non-state actors. In Sudan, we have the Sudanese Association for Psychologists and Psychiatrists together, and they have hotlines and they have active clinics to provide physical, to provide psychological, and social support, especially to women who are victims of sexual violence. And that's my last slide. Thanks for your attention. Thank you, Dr. Goffer. I'm Eric Krakauer. I'm neither a gynecologic oncologist, nor have I actively participated as a humanitarian responder, as has Dr. Goodman. I'm a palliative care specialist, and while I was medical officer for palliative care at WHO, I was honored by being asked to develop an essential package of palliative care for humanitarian response, along with colleagues from around the world. I've spent most of my career working in low-income settings, including some where there's ongoing violence, such as Haiti. Next slide, please. I don't receive any funding from private industry. Next slide. So in the next 10 minutes or so, I'll discuss the moral and medical imperatives of integrating palliative care into humanitarian response, explain the false dichotomy of saving lives and relieving suffering, and then describe the essential package of palliative care that I helped to develop for humanitarian crises, including medicines, equipment, and human resources. Next slide. So what exactly is palliative care? Well, the definition is a bit in flux, but in our guidance document that I edited and helped develop, called Integrating Palliative Care and Symptom Relief into Responses to Humanitarian Emergencies and Crises, WHO defines palliative care most simply as prevention and relief of suffering of adults and children and their families facing problems associated with life-threatening illness. Well, I think the way I interpret that is that these problems are found even in situations in patients who don't have a life-threatening illness. The specific type, scale, and severity of suffering vary around the world based on economics and the spectrum of diseases and by culture. And suffering may not only be chronic, but also acute and non-life threatening. And even acute suffering is often not relieved. And where it isn't, there's a role for palliative care. Next slide. So this is the document that I edited for WHO. It's available at this website, or just go to, just Google WHO palliative care and humanitarian emergencies, and you should find it. Next slide. So what's the moral argument for palliative care in humanitarian medicine? Well, Dr. Goffer mentioned the UN Office for Coordination of Humanitarian Affairs, or OCHA. And their handbook states that international humanitarian assistance aims to save lives and alleviate suffering. Both, not just save lives, but alleviate suffering. It also discusses the four basic principles of humanitarian action. The first of which is humanity, and that's elaborated as human suffering must be addressed wherever it is found. In addition, the World Health Assembly in 2014 issued a resolution on palliative care, stating that it's the ethical duty of healthcare professionals to alleviate pain and suffering of any kind, physical, psychosocial, or spiritual, regardless of whether the disease can be cured or not. Next slide. The medical argument. Well, saving lives and relieving suffering are not mutually exclusive. This is a false dichotomy. And I'll just give some examples. Symptom relief itself can reduce morbidity and mortality. For example, control of post-op pain can reduce risk of pneumonia, deep vein thrombosis, cardiovascular events, and that list can go on. Unresolved, uncontrolled pain can also cause immunocompromise and other problems. Then there was a study showing that use of morphine during early trauma care after serious traumatic injury can reduce risk of post-traumatic stress disorder. Another example from the Ebola epidemic, control of vomiting and diarrhea not only made patients feel better, but also reduced volume depletion, electrolyte derangements, and virus transmission. I could multiply these examples. Symptom relief, saving lives, and relieving suffering are not dichotomous. Next slide. So the current status of humanitarian medicine, palliative care and humanitarian medicine is really not so good. The medical humanitarian guidelines don't have much information on palliative care. The Sphere Handbook only considered palliative care end-of-life care. End-of-life care is really only one part of palliative care. And then so-called expectant or dying patients and their families are sometimes neglected or abandoned with the thinking that all resources have to focus on saving lives. Again, there's the neglect of relief of suffering and then mental health services which are desperately needed both acutely and chronically are rarely available in low and middle-income countries to treat the acute and long-term psychological consequences of the kind of traumatic events that Dr. Gaffer and Dr. Goodman mentioned. Next slide. Types of humanitarian emergencies and crises, those have already been mentioned, but I would just have one brief disagreement with my very esteemed colleague and friend, Dr. Gaffer. Most so-called natural disasters are really man-made in that the severity of the suffering related to earthquakes, storms, tsunamis, famines is very much related to the economic status of the area where the event occurred and the strength of the healthcare system. So for example, an earthquake in Japan that was stronger than the one in Haiti in 2010 killed not that many people compared to a weaker earthquake in Haiti that killed thousands and thousands. So natural disasters, I wouldn't use the term natural because I would say it's not natural to have a very weak health systems where people don't have access to basic care or nutrition for that matter. Next slide. We've already talked about the most vulnerable populations and I would just emphasize that there's often combined vulnerabilities such as impoverished women and girls with cancer living in areas with weak healthcare systems. So many of the vulnerabilities occur together. Next slide. During the COVID epidemic, we developed this table showing the kinds of suffering that tend to occur in different kinds of humanitarian settings such as COVID-19 earthquakes, genocide and war and influenza pandemic. Some of this is hypothetical, but what you can see is that pain is always a threat. What you can see is that pain is always a problem and psychosocial problems or psychosocial suffering is present with every kind of humanitarian crisis. Next slide. So coming to the WHO essential package of palliative care, we developed such a package for any setting and this was based on my work with the Lancet Commission and it's designed to alleviate most health-related suffering and to be universally affordable and accessible even for the rural poor. And it has these five components that I'll go through. Next slide. So the interventions are quite simple. Prevention and relief of pain and other physical suffering whether acute or chronic, psychological suffering, social suffering and spiritual suffering. Next slide. The medicines are based on the WHO model list of essential medicines for palliative care, but it's a slimmed down list and we wanted to just identify the medicines that offer the best balance in their class of accessibility on the world market, clinical effectiveness, safety, ease of use for clinicians with just basic training in palliative care and low cost. Next slide. And here's the list of medicines and I'll emphasize just a few. Morphine in an oral immediate release form and injectable form. And it's a big problem getting controlled medicines like morphine into humanitarian crisis settings because of importation rules and customs officials who don't know the rules that it is. There is a method to get controlled medicines into crisis areas, but many humanitarian response organizations don't order kits with controlled medicines because they're so afraid that they'll be held up and they often are. And if the kit controls controlled medicines and it's held up, then the humanitarian responders get nothing. I also just mentioned two medicines that are so important for a variety of reasons. Any of the selective serotonin reuptake inhibitors so important for anxiety and depression and haloperidol also for anxiety, but also for some nausea and for delirium agitation. These all can be used safely and effectively for clinicians with basic palliative care training defined as 35 hours or so. Next slide. Equipment is very basic and I'll just mention opioid lock boxes, very important to keep controlled medicines safe, accessible, but also minimize the risk of theft or diversion for illicit use. Next slide. Social supports. Somehow they didn't appear here in this slide. So it includes such incredible luxury items as shoes, sleeping mat, blanket, toothbrush, food packages, and transport if needed, funding for transport to reach medical services. And this should be made available at least for patients living in extreme poverty, which often includes most people displaced by humanitarian crises. Next slide. Sorry about this one. The essential package was modified for the document that I showed you on response to humanitarian emergencies and crises. It was modified to include several items, including medicines, injectable fentanyl, injectable ketamine, injectable midazolam, fentanyl transdermal patches, and slow acting morphine for reasons that are probably obvious to most. Next slide. Also modified to include equipment to improve mobility such as wheelchairs, walkers, and canes. Also to include training for humanitarian responders, basic palliative care training for physicians and nurses who participate in humanitarian response. If surgeons are in the OR all the time, maybe they don't need the training, but essentially I think all physicians and nurses who do humanitarian response should get this training. And very important, as Dr. Goodman mentioned, a big part of the role of humanitarian responders is to help rebuild healthcare systems. And that should include rebuilding a system that includes palliative care. Next slide, please. Also the augmented package for humanitarian emergencies and crises. There should address some specific situations, particularly so-called expectant patients, patients who cannot be saved under the current circumstances. There should be efforts to provide a quiet and private location. Symptom relief is absolutely essential, psychosocial support and bereavement support. For extremely traumatic humanitarian emergencies and crises, more psychiatric support is needed, particularly important for psychiatrists to have some training in humanitarian response where many children are involved. Child life specialist is very important. And then for protracted humanitarian emergencies and crises with physical disabilities, experts in physical therapy and physical medicine rehabilitation. Next slide, please. There's a basic curriculum for training that is available. And before COVID, we were trying to work with a group, including the International Federation of Red Cross Societies, the International Committee of the Red Cross and Doctors Without Borders to develop a palliative care training course for humanitarian responders. That hasn't happened yet. Next slide, please. I think we're just about done. So this was the standard in the past, the standard triage category. It was used very commonly for humanitarian emergencies and crises with dying patients put down at the bottom in black where it almost suggests that these patients should be abandoned. And there's no mention here of relieving suffering. Next slide, last slide. This is the recommended revision of the triage categories with palliative care included in all parts, recognizing that sometimes saving the life in the red category must take priority, but palliative care should be integrated with life-sustaining treatment as much as possible. And then the blue category, survival not possible, but palliative care is imperative. And then palliative care is needed in the other categories. I think there's one more slide just as a thanks. Thank you very much. I'll pass over now to Dr. Goodman. Thank you. Hi again. Wow. Thank you so much. Both of your talks are so beautiful. So I guess I'll start by saying, why GYN oncology in this setting? And the answer is, well, of course, GYN oncology. We take care of women. We take care of children. We take care of women. We take care of very complex medical and surgical issues. And we will most likely find ourselves in disaster settings or volunteer in settings of crisis. And therefore the skillset that we've developed will be useful. Next slide, please. You know, why talk about this? I actually got involved in disaster work 20 years ago. I was deployed into Iran as part of the federal disaster team and was completely unprepared and untrained, but learned a few things from that first experience, which is that people die from grief. They die from extreme suffering. They lose everything. And so many women are impacted. And that to treat them, you not only have to treat their injuries, you have to treat their grief. Next slide, please. Just, you know, we've talked about the need for training and the fact that there is a lack of training. We have an environment that's challenging and we need to be creative. Next slide, please. So just to sort of, again, reiterate palliative care is for everybody. It's for people with life-limiting disease and end-stage organ failure and cancer and so forth. And our goal is to relieve physical and psychosocial and spiritual symptoms and also to support family. Next slide, please. You know, the thing about palliative care is it recruits and uses everything available, and that's what's so incredibly cool about it. Next slide, please. You know, we've talked about the definition of palliative care, and in a setting where you have all the resources you need, you can throw it at people as they need it. So you can have an older lady with ovarian cancer with failure to thrive and symptoms and fatigue that you're managing. Next slide, please. But you also will have people with unrelieved pain and terrible, horrible symptoms, such as this lady who has vaginal cancer, totally isolated with pain and bleeding and really, really in need of so much care. Next slide, please. You know, and in the setting where you have everything you need, so I've listed here a palliative care infrastructure of a fully-functioning society that's got trained providers, that's got all the meds you need, that has just, you know, lots of gadgets and surgical options, you can take care of this 32-year-old with her current cervical cancer, where you can bypass her gastric outlet obstruction with a G-tube and give her total parenteral nutrition and manage her with multiple meds and lots and lots of interventions. Next slide, please. You know, and we think about managing all our patients with our sense of ethics, with our sense of doing no harm, doing the best we can, having a time for our patients. Dr. Krakauer mentions the issue of social justice, the discrepancies of resources that people have and try to alleviate that. Next slide, please. However, once a disaster hits, all of a sudden, you lose your infrastructure and all that available care is not available. And one of the chaplains in the Katrina disaster said to me that there were daytime rules, which is Boston and Paris and Seoul, Korea, and every place where we can get pretty much all we need. And there's nighttime rules, where we basically are flying by the seat of our pants, trained or untrained to try and deliver great care and alleviate suffering. Next slide, please. So just to sort of think about that, we've talked about the challenges, basically losing everything, shelter, food, family, resources. Back to my experience in Iran 20 years ago, we took care of a woman with advanced ovarian cancer. We did a paracentesis in the field, gave her a little morphine to try and help her in her last days. Next slide, please. We've talked about who needs palliative care, which is those with life-limiting illnesses and a new group of people with mortal wounds and injuries from the disaster of hands. And we are always, always left with a scarcity of resources that we have to triage. And that's part of the agony of working in a humanitarian setting. Next slide, please. There's a shift in the field. There just is invariably where your goals become saving lives and stabilizing injuries and definitive care. And so to Dr. Fackauer's point, we need to always remember about alleviating suffering. Next slide, please. There's also challenges among the group. The disaster team is coming in, they're working temporarily, they're gonna be leaving. You know, everyone's traumatized. It's all a jumble. Next slide, please. There was an interesting study from Iran and from the area among nursing students who had survived the devastating earthquake of BAM. And it was a questionnaire from which was discovered that these nursing students in their answers said they'd be less likely to give any care to people at the end of their life. They were focusing on people who could survive. So there is this inherent, back to Dr. Fackauer's point, putting it in the black, the expectant category. Next slide, please. Just gonna take a peek here. There's a question, how do you care for your own emotional wellbeing and health when working as a palliative care physician? Great question. I will answer that. just to go through a few more things and then I'll answer that question. Let's go back to Katrina. We learned a lot from Katrina. It's been very well studied on many, many levels. A devastating hurricane that impacted Louisiana and the Southern states. There was a lot of deaths in the United States and there were a lot of missing. Next slide, please. And one of the things that we really have reflected on and over the years is the story of Dr. Poe who was a cancer, is a cancer surgeon and was confronted with not being able to alleviate suffering and chose to do euthanasia for chronically ill patients and leading to this sort of ethical issue of ethical consideration of alleviating suffering, but not euthanasia. Very interesting and profound issue. Next slide, please. I'm just trying to remember what my next slide is. Okay, thank you. There were a lot of lessons learned in Haiti, another disaster, oh gosh, over 10 years ago about the need, again, without lots of resources to rely on your basic physical diagnostic skills and implement palliative care in an individual fashion. There was, in the cash, morphine and opioids. There was also the ability to do some palliative surgery such as amputations for terrible crush injuries and debridements. Next slide, please. Looking at the field experience in the U.S. disaster team that went down there, the deaths were half female, young people, a lot of injuries, but a lot of actual chronic illnesses. I'm going to spend my last few slides just giving you a few examples of that, but I just wanted to touch upon a few other things first. Next slide, please. Okay, this is sort of an aerial of the camp in Port-au-Prince where people gathered after their houses were destroyed. Next slide, please. You know, we had medications to support people. Next slide, please. I want to talk about the barriers to palliative care. There was a lot of problems with space. There were so many injuries. We had limited meds, and then there was the issue of personnel, language barriers, emotional boundaries, and exhaustion. Next slide, please. So I'm going to get back to those issues and end up with them, but I just wanted to touch upon two more recent crises. The one is the ongoing and protracted crisis of the Rohingya refugee camp, the largest refugee camp in the world, and you remember my slide showing that in the islands. In Myanmar, it's about the highest in the world, and one of our colleagues, Dr. Daugherty, did a presidential study looking at palliative care needs in these refugees in this humanitarian crisis, and what she found was that for patients with chronic illnesses, they experienced significant pains. They had very ineffective treatments, and this is in the setting of a lot of NGOs working in this area. There were tremendous physical needs, emotional and social needs, and this also spilled over to the caregivers who had tremendous anxiety, exhaustion, and depression and trauma. Next slide, please. The next study, just to look at it real quickly, is a current report of, again, another protracted conflict leading to a protracted humanitarian crisis in Syria, where in the setting of displaced people, those with cancer receiving aid had tremendous financial burden, which is another issue around chronic disease and trying to manage it. Okay, next slide, please. I just wanted to sort of go back to thinking about managing a few patients, especially those with pre-existing conditions, some who are acutely injured in the quake. Next slide, please. And just think about the lessons learned. We took care of one who was a very elderly lady who was actively dying from crush injuries, and we were able to clean her up and palliate her for the last 24 hours of life. Next slide, please. We also took care of multiple women who were very young who had injuries and were concurrently pregnant, one who had become paraplegic. Next slide, please. And in the setting of these acute injuries in the setting of pregnancy, the big risks are death from infection, aspiration, renal failure, and these are tremendously devastating injuries as Dr. Kracauer talked, part of the care needs to be to try and rehabilitate these patients into their communities with their new restrictions. Next slide, please. Another patient we took care of found incoherent and renal failure, bleeding by undiagnosed cervical cancer. Next slide, please. Whom we palliated and basically supported her. She died in about a week, but there was no access to dialysis or other interventions beyond just palliation and supportive care. Next slide, please. And finally, we saw a lot of cardiac illness because of pre-existing rheumatic heart disease. And this young woman came in in congestive heart failure with hypoxia, requiring diuretics. Next slide, please. And in the setting of loss of infrastructure, the kind of very old-fashioned measures to try and help relieve her suffering until we actually ended up airlifting her to the United States and she survived. Next slide, please. I think that they're just sort of some kind of examples of some of the lessons learned were the use of creative medication where you can, pain medication really pushed that, but also the utilization of families, utilization of being able to listen, chaplaincy, and to the question of how do we cope doing decision-making in these very difficult decisions where you know someone is not gonna make it and how do you manage that to do it as a group, to not be alone in your decision-making. Next slide, please. This is a graph actually from a mental health lecture, but I think it really works for thinking about palliative care. The top of the pyramid is the sort of fancy medicines and interventions that we do to support people to relieve their suffering. And then the next level down is a little less tech, sort of general stuff, diuretics, supportive care, a little hydration, and so forth. And then the steps below that is basically utilizing family and community and rebuilding family and community in terms of basic services in the setting of palliative care. Next slide, please. I think that just, again, the other lessons learned is that this has a tremendous emotional impact on providers and it is important in the moment to talk about it. It is important in the moment to have consensus and work together, but that these are impacts that will carry on and that there needs to be interventions once you've left the setting for ongoing health, ongoing sort of discussions. We need to improve palliative care as is being discussed. And just the debriefing is very important. And I think I just have one final slide, which is just something I suggest, I recommend to all of you read, which is a Lancet paper from 2022 that just talks about the value of alleviating suffering and dignifying death in war and humanitarian crisis. And just to sort of touch on the really important points, the importance of prioritizing fight compassionate care for the dying, even in the setting of conflict, the need to leverage a multidisciplinary team and also to create safe spaces, both for the providers and for the community to help with grief, to strengthen the issues of bereavement support and really to include the families in your patient care. And I think COVID has given us the gift of telemedicine and we can now provide telehealth support. We do that in Ukraine a lot and other areas where we can do training and we need to treat our serious health related suffering to see if we can find strategic responses. And then finally, we need to create pathways where we can always try to alleviate care. And I think I've gone over, so I'm so sorry, but that's the end of my lecture. I think I have just one last slide just to say thank you so much. And I see that there's some questions, maybe to open it up. Thank you very much, May Kay and all the speakers, it's been brilliant. I've got an option now to ask questions for anyone. I seem to have lost the questions here, but I do have two questions. What happens when the acute team leaves? Are there programs to assist with long-term assistance within the international organizations? Yeah, that's a really great question. And the ideal setting is that the acute team is handing over to the team on the ground and I think there has been a push over since Haiti. So the past 15 years pretty much to develop these emergency medical teams, Dr. Crackel talked about that a little bit. And many of that is resources on the ground in the particular location, so the host community. So for instance, taking the example of the devastating earthquake in Turkey last February, February, 2023, there was an influx of teams that helped and then gave over to the local healthcare infrastructure. And Turkey is a country with an amazing healthcare infrastructure that's preexisting. The region that was devastated by the earthquake lost a lot of their healthcare structures so that you rebuild it. So that's the ideal setting, absolutely. Thank you. There's one other question that I have directed to all of the panelists. One, how do we, as perhaps gynecologists in non-crisis centers, act to support carers in the crisis areas who are dealing with pain, suffering and limited or nonexistent resources? What can we do? Do you want to take that, AK or? AK or Eric or Dr. Gaffer, anyone. Well, I guess one thing that I would say is that in my own experience and I think experience of others, it's difficult to get permission from our bosses, our hospitals, our universities to participate in humanitarian response because somebody has got to then fill in for us and we're all tend to be maxed out taking care of patients. So that's one thing that we need to then, I think it's important for there to be a backup system so that those who wish to take on this task of humanitarian response are able to do it. Dr. Gaffer, your hand was raised. Yes, I'd like to mention that several instances of doctors traveling from USA, from Canada, they managed to get permission and enter into Gaza and they held for two weeks. And then I would like to mention in Sudan that there was a network between palliative care physicians and other physicians with the palliative care team who are in other cities. And so they were still providing care to the patients sometimes by telephone, advising the patients to take like alternative medication or another solution. And so there is a way to help. And on the chat, I'm going to write the names of two NGOs because I see the question about how can one volunteer to help in humanitarian situations. So I'll write the name of these NGOs and it's PAL-CHASE and CARD-ICE. Thank you. Dr. Dranc, if I could just follow up on your first question. Yes, please. My understanding and AK correct me if I'm saying something wrong here, but the focus of humanitarian response teams should be to assist local colleagues to respond. And when local colleagues are not able to provide adequate response, they're overwhelmed. Sorry, if everyone else could mute, then there can be direct care. But part of that assistance to local colleagues to be the main responders is also from the very beginning to think about how to help build back the healthcare system that as Dr. Goodman said, has been destroyed or severely damaged. So that it should not be the parachute mode of parachute in and leave. That's not optimal, but a lot of this depends on funding. But the point is not, we know better, we'll come in, we'll do everything ourselves. How can we assist the local colleagues to respond and to build back their healthcare system? Over, thanks. Yeah, I agree. So just real quickly. Thank you, Dr. Gotha and Dr. Kracauer. It's really about rebuilding the local resources as much as one can do. The big challenges and protracted crises in a country that's got intact infrastructure that's just had a devastating crisis, such as the example I gave of Turkey, we rebuild. We help, it's effort, it's tragic and you overcome it. Protracted crises are much, much, much more complicated and hard. And your big organizations through World Health Organization and UNHCR and the various groups that come together to coordinate care and NGOs can be helpful there. I would also say that with telehealth, there is the ability to reach out so that people on the ground don't feel so alone and that they have a space where they can go over cases. Good. Dr. Mubaru, I think you have a couple of questions and then we're probably at our time limit. I think there was one question that kept sort of recurring, even if it's in a different way. And the issue has been, how do we navigate language barriers and cultural differences when providing palliative care in diverse settings? And this mostly comes about when you have like external doctors coming from different countries with different cultures, then come in and not understanding quite well what exactly the community responds to. So how do you deal with such things? So thanks, Dr. Mubaru. And thank you both actually, Dr. Grand, Dr. Mubaru for inviting us. From my own perspective, working in many low-income settings, I always try to have a local colleague with me to prevent me from making the kinds of cultural mistakes that are inevitable. In fact, there's a movement now within palliative care, certainly within my own team, my program in global palliative care here at Harvard Medical School, to recognize that palliative care must be contextualized because Western values are not always the same as cultural values in other settings and how people want to communicate and their understandings of health and illness and death and dying and afterlife vary. So it's very important for humanitarian responders as much as possible to always have not only translators, but cultural advisors to advise how to, for example, do pelvic exams, how to discuss a terminal prognosis or a very serious prognosis, how to take care of a body after death, how to provide all kinds of care. Very important issue that should be built into humanitarian response, over. Dr. Nafl, I think your voice, your hand is raised, but you're muted. Peter, you're also muted, I think. Unmuted, unmute. Once again, I want to thank all the panelists. It's been fantastic. We still have a few questions that we can deal with offline, but I think we have to now say thank you to everyone for attending. I think it's been a great portal, a great educational experience, and it will be up on the 360 Learning Portal in 24 hours. Thank you very much.
Video Summary
In summary, the webinar featured speakers discussing the role of palliative care in humanitarian settings, focusing on the need to alleviate suffering and prioritize compassionate care. The speakers shared experiences from crisis situations, such as Haiti and Rohingya refugee camps, highlighting challenges like limited resources and emotional impact on providers. They emphasized the importance of building back healthcare systems and assisting local colleagues to respond effectively. In dealing with language barriers and cultural differences, it was suggested to have cultural advisors and local colleagues to guide interactions with patients. Overall, the webinar provided insights into the complexities of providing palliative care in humanitarian crises and the importance of compassion and support for both patients and caregivers.
Keywords
webinar
palliative care
humanitarian settings
alleviate suffering
compassionate care
crisis situations
limited resources
healthcare systems
cultural differences
compassion and support
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