Okay. So let's start. Okay, well, good news is, is the patient just presented definitely doesn't need hospice care right now and doesn't even need palliative care right now. So that's good. So we'll talk about some other patients. I'm Siobhan Kehoe. I'm a GYN oncologist. I'm also currently taking a master's in palliative care through the University of Maryland online and happy to be here today to talk to you about palliative care. So, you know, one of my courses looked into the, you know, the meaning and the basis of what palliative care medicine is. And we had to go and ask multiple people, many in the medical field, what they thought palliative care medicine was. And I was a little surprised to see that misperceptions are quite, quite common. So just the basic definition, it's a remedy, it's medicine, it's relieving pain or any problem and palliative care medicine. And this is from the Center to Advance Palliative Care, which is a wonderful resource, which I'll tell a little bit about more later, is really a specialized medical care for any person living with a serious illness, regardless of the expected outcome. So this idea that it's only for people who are going to die relatively quickly is not quite right. It's actually for any patient living with a serious illness. And the goal is simply to improve quality of life for not only the patient, but for the whole family or their defined family or who they bring with them as they're going through this life challenge of a disease. And it is to provide relief from symptoms as well as the stress of the illness for them and for their associated family. And it really revolves around an interdisciplinary team. It involves doctors, advanced practitioners, nurses, pharmacists, social works, chaplains, others. And it really is supposed to be intended to be an extra layer of support. And the palliative care secondary or specialty palliative care team should really work completely in conjunction with the primary physician who is treating the actual disease. And really, palliative care is based on the needs of the patient, not the prognosis of that patient. And once we start giving secondary or tertiary or quaternary chemotherapy, we are not most likely going to cure that cancer. But we are definitely going to expand and extend that patient's life. And with all of the interventions that we have, we have multiple symptoms that are involved. And taking care of those really becomes a priority as we're extending patients' lives. So palliative care is a very important part of how we take care of patients. So what is palliative care in clinical care? So really, it's appropriate at any age, at any stage of serious illness. And it definitely can be provided along with curative treatment. And I have heard a lot of misperceptions that it is only given once we stop curative treatment. And that is not the intent of palliative care. The intent is to be provided along with curative treatment. So it starts at the time of diagnosis, no matter what that expected outcome is. And it can be given with any active treatment. And again, we address physical, intellectual, emotional, social, and spiritual aspects of a patient as she is going through the disease. And it allows us to really get the patient involved. It allows us to know what her understanding is of the disease, how her culture and her beliefs factor into how she's going to interpret, manage, and deal with her treatment. And it really is a patient and family-centered approach. I want to just emphasize, again, there is no need to choose between active treatment and palliative care. No need to choose at all. They are definitely parallel and run in conjunction. So I guess this is a good time. This is not a talk about hospice. This is a talk strictly about palliative care. Hospice, by definition, is comfort care for those that are at the end of life. And by CMS, it has to be a doctor gives the diagnosis that the patient, if the disease were to carry out its normal course, will die within six months. And then they become a candidate for hospice. And obviously, people are on longer. Our good Jimmy Carter took advantage of the hospice care for close to two years, if not a little bit more. But the reality is that each time that he was reevaluated, the doctor said the likelihood that he will not be alive of this disease in six months is high, enough for us to re-enroll him on hospice. So palliative care is, again, starting at the beginning of the diagnosis. Hospice care is very different, but I wanted to point that out. And this is a talk that is going to strictly focus on palliative care. And so there's a diagram here showing what our traditional concept is, maybe not traditional, but what the concept that many people have is that once you are diagnosed with a serious illness, you move into active treatment. And when that active treatment is no longer working and we have decided to shift out of active treatment and focus on end of life, then palliative care and hospice becomes important and then death occurs. But the actual concept of palliative care is that once you have a serious diagnosis made, then you start active treatment and you start palliative care at the same time. The patient may go into remission and hopefully will never have to deal with the disease again. Eventually, they will die because here's the news. We all die at some point. But for those patients where the active treatment eventually stops working and they transfer into hospice care, again, palliative care is sort of precedes hospice care and hospice care continues the focus on treating the symptoms and increasing quality of life. And then a patient dies. And the very important role of the continuum of palliative care and hospice is to continue bereavement for the loved ones and family for a patient once she has died. So in 2002, actually, a number of leaders across the country and the United States got together to discuss how do we create guidelines for patients who don't meet the criteria for hospice but definitely have needs that really are very, very important and paramount and need to be focused on? And how do we create a set of guidelines for our health care providers to incorporate into their treatment? And in 2004, actually, they came up with a number of very specific guidelines and created eight domains that have now been updated as the years have gone on. And I just wanted to just kind of give you an idea. I know my time is limited, but I wanted to just put out there that the National Coalition for Hospice and Palliative Care has these guidelines. And I have the domains here. It's all about the structure and what is the actual process of giving palliative care, really focusing on that interdisciplinary team. And how do we coordinate the care between the palliative care team as well as the primary team, the GYN oncologist? One of the very important domains is the physical aspect of care. How are we treating the persistent nausea and vomiting, per se, or the pain that the patient has, the neuropathy patients have, the whole host of physical ailments that occur probably one, because of the disease, but also two, because of our interventions. Domain three is the psychological and psychiatric aspects of the disease, focusing on how are we addressing anxiety due to the illness and really incorporate social work as well as mental health specialists into the care of any patient who is dealing with a serious illness. This includes focusing on anticipatory anxiety, anticipatory grief, and then, of course, continuing that to dealing with the grief that loved ones suffer from once they have lost a loved one themselves. Domain four is the social aspects of care. Behind every patient that we see in the room is a world out there that she has to tackle. There are many, many needs that we need to help her deal with as she's dealing with the treatment of a serious illness. Social supports are very important, helping her deal with relationships and how is she going to organize and deal with her life that's still existing while she's getting treatment for her advanced cancer. Spiritual, religious, and existential aspects of care are so important. A chaplain is a huge resource through palliative care that can help. My most recent class really delved into the idea of pain beliefs. It has been a phenomenally interesting learning that there are cultures that have ingrained people to believe that if they have pain and they're suffering, that they are not on good spiritual ground and that perhaps their God or their higher power is not happy with them and that is why they're feeling this pain. You would imagine how that would really perhaps affect how they would admit that they're having pain or tell us or maybe even think that they deserve or don't deserve. There are some cultures that believe that pain is the gateway to heaven for them. This may have people refuse certain treatments, again, not admit. It's such an interesting concept of pain beliefs and how our culture, including our social beliefs and our religious beliefs and our spiritual beliefs really fit in to how patients are going to accept, deal with disease. It's really important to have that be part of the discussion, which may be hard for some of us that were not trained in that. In the palliative care interdisciplinary, the chaplain has a huge role in bringing that to light for the patient and for us. Again, in similarity with domain five is domain six, which is the cultural aspects of care, which I'm sure as you go through a clinic day and see people from various backgrounds, it's quite interesting and quite fun for me to see just the way a person's background really affects what they say and do in my clinical exam room and then, of course, outside. Domain seven is then focusing on the care of the patient who is nearing the end of life and this is where the hospice aspect comes in. Of course, domain eight brings us back to all the ethical and legal aspects of care. I'm talking about, does the person have an advanced directive? Who is going to be the person that speaks for them when they can't tell us what they want anymore? There's so many different varying options and it can be quite overwhelming, so having someone in the palliative care team who can walk a patient through it. One of my assignments was actually to look up advanced directives and go through it with a loved one. I was a real hit around the holidays when I was like, hey, Merry Christmas, now let's talk about death and how you want to die and where you want to die. Everyone was like, yeah, you don't get dessert this time, but the reality is it's so important and I looked at advanced directives here in Pennsylvania and they're different than the ones in New York where my family lives. I mean the same but different and there are different types and so it can be very overwhelming, but the reality is it's so important to have a lot of these conversations done before a person gets to the end of life and so that they can express it and they can have their loved ones know and understand and have it documented in case a situation arises more abruptly than we thought because these occasions will arise, it's just we want to be prepared for them. I just want to touch base on spiritual care briefly. It really contributes to the well-being of patients. There's a vast, vast literature on this. It also helps the caregivers and the loved ones. It really does focus on spiritual beliefs and existential pain and the idea, again, the concept of pain beliefs is so huge. There's a ton of data on that too and it really can be useful for all patients really, even if they're not affiliated with a specific religion. There is the concept of religion and people have religion, but people also have a spirituality that can be separate from religion. There's this concept of discussing idea of miracles. I'm sure many of you have heard, but doc, I believe in miracles and what does that mean and how do you answer that? Actually, there's a lot of literature on what is the etiology of people saying, I believe in miracles. For some people, it's really just how connected they are to their beliefs and a higher power in God, but some people actually use it as a way to tell their mistrust of the medical system. It's very interesting and little tricks of how to respond to someone who says, I believe in a miracle and this is going to all go away and I'm going to be fine. I found the tricks very helpful as I read through it. This is where the specialty of palliative care can help and again, chaplains can have a huge role. Why specialty palliative care? These are expert trained physicians who can deal with complex physical and emotional symptoms that arise from disease. Just listed a few of them there that you know of and really prioritizing time for intense family meetings and to sit down with patient and families. In a busy GYN oncologist day, when you're trying to get to the OR, you're trying to make rounds and you're trying to then get to your clinic the next day and then fit in all of the other things in terms of teaching and administration and research. To sit down and spend an hour having a difficult family conversation can be quite hard to fit that in. You may have the skills to do it, but finding the time to do it can be very hard. Specialty palliative care can really provide that time. They are trained in skilled communication of how to approach common responses and then uncommon responses from patients and family. Really then acting as a coordination and the coordinator and communicating between the primary team, the patient, is the palliative care team that can connect. Hospice and palliative care medicine is a recognized subspecialty and it's boarded through the American Board of Medicine and actually they're really trying to encourage surgeons to shift towards and get a year training. I myself will be starting a fellowship in July at Jefferson in palliative care. Yes, I definitely have more wrinkles than my co-fellow and many of the people that I interviewed with, but my background in GYN oncology was very intriguing to many of the people that I interviewed with. Actually there are some recommendations that GYN oncology find champions in palliative care to be part of their division and even practitioners that have actually spent one year, it's only one year compared to the three or four years we spent in GYN onc, training in palliative care. And again, I think it's very interesting as they're getting more ER, there are many ER physicians, really no surgeons, but there have been some in the past, and getting more ER and surgical specialties involved into palliative care. So proven benefits, they are there, they are in the literature, the data exists that it is definitely beneficial to have palliative care involved with your patient's journey. It improves patient satisfaction, it also improves caregiver satisfaction, which is so important. It improves survival, and not only survival in terms of month, but survival with quality of care. Better quality of death, which is so important, not only for the patient, but for the people that survive her. Decreases physical and emotional stress, and actually decreases cost. We see decreased ER visits, we see decreased hospital admissions and readmissions. And for anybody in administration, ears perk up, they love decreased cost. And so where does palliative care lie in GYN oncology? Well, SGO in 2015 did make the position statement that early incorporation of palliative care for women who are diagnosed with advanced malignancies really should be done. We should incorporate it early in order to give the most comprehensive clinical care throughout the course of their disease. And of course, SGO in 2016, we were ahead, we said in 2015 it should be done, SGO supported, said all patients with advanced cancer really need dedicated palliative care services early in their diagnosis. And this article was very interesting in the Annals of Palliative Care in 2022. Many familiar GYN oncologists are authors of that article, and it really explored where we are in terms of incorporating palliative care into GYN oncology, how we can do it from a specialty palliative care perspective, how we can also do it through a primary care perspective, which means we ourselves are doing the palliative care, and really gave many helpful tricks and techniques and also links to ways that we can educate ourselves, which I will talk about in a moment. So really, all GYN oncologists should be educated in primary palliative care skill sets and then have the ability to say, this is a patient who I should refer to a palliative care specialist. So there is lots and lots of evidence within the literature saying that there is benefits to integrating palliative care, but there's also evidence in the literature to say that it's still underutilized. And so in this one paper found that less than 50% of medical and surgical patients received a palliative care or hospice consultation in the last year of their life. And of those, the surgical patients had less referrals. So it's not being done. This is a list, so it looks very overwhelming at first, but the data is out there to show that it really does help. So really the question shouldn't be, should we refer? It should be, when should we refer and who should we refer? And so if we were referring patients, because we know that the integration of palliative care really improves their quality of care, improves their own perception of their outcomes and decreases the cost. There was a randomized study, which actually had 71 GYN patients. There were really no randomized trials of GYN patients alone, but they are incorporated into other trials that are just looking at solid tumors. So in this one study, patients did have significantly improved quality of life scores, symptom management and satisfaction with their care in this paper where patients were given the extra assistance of palliative care specialty versus routine practice. And just to show this one paper, again, it wasn't GYN oncology patients, but it was patients with advanced cancer that actually had a survival benefit of a few months. And again, it's important, our perception of what a goal should be may be very different as healthcare providers and what our patients are. So very important to bring that to the surface and what does the patient want? What do we want? What do we think each other wants and how do we come together and align those goals? And so, who should be referred? There are guidelines, there are lists basically from the centers to advanced palliative care. They've given guidelines, advanced stage cancer. So if you have a primary diagnosis of an advanced cancer, you don't really know what her outcome is going to be, but because she has advanced disease that is going to disrupt her life, including changing her time schedule and her timeframe to come and get treatment, and then dealing with all the side effects of treatment, she is a candidate. Of course, any patient with recurrent disease, patients who are having frequent visits to the ER or frequent admissions are definitely candidates for seeing a palliative care specialist, people of limited social support, complex care requirements and complex goals of care. And really using a screening tool can be very helpful. And in my master's course, I am learning that there are tons of screening tools for many, many things. And this is one screening tool that I found very helpful, which is the Edmonton symptom assessment system, very straightforward, easy for your patient to fill out, sitting in your office, waiting for you to come in with the MA, with the nurse on their own, to really go through what level are they feeling of these very important symptoms. There are, like I said, multiple. So here's another checklist on the left here, another referral symptom, asking certain questions that are relatively easy to fill out, either on their own or to be done with somebody. What I also find very interesting was that UNC actually came up with a surgical ICU screen, which they report takes three seconds. If you ask yourself these three questions, is there a concern that the patient may need palliative care? Yes. Does the ICU or surgical team report a poor prognosis? Yes or no. Are irreversible progressive comorbidities that severely impair function found? And you may say, well, okay, you know, we look at a patient and we say, we can answer those easily, but is that being done in the acute setting when the patient is in the ICU? And probably not. But the only thing that this is sort of, listening to people who came up with this at UNC, it really was to get physicians to start thinking about palliative care as early as possible, because it really can have a much bigger impact the earlier we started. So why are we not making referrals? Again, there is data, a retrospective review, particularly in ovarian cancer patients, this study showed that 28% were referred to palliative care. And of those, 58% were done in inpatient. So we really wanna move to more patients being referred to specialty palliative care and more done as an outpatient. But why isn't it being done? So 98% of NCI-designated cancer centers are reported to have a specialty palliative care division. So that's great. However, in non-NCI-designated cancer centers, only 61% have palliative care as a specialty. And 80% of patients, or maybe a little bit more than 80% of patients, are actually being treated at non-NCI-designated cancer centers. So if most patients are being treated at places that don't have specialty palliative care, then they're not being referred. And that makes sense, because the access isn't there. So obviously, lack of palliative care is a factor, variability in inpatient and outpatient availability is a huge factor. Again, I think the specialty is trying very hard to encourage practitioners, I guess, like myself, who have been out practicing for a while to get more specialized training and have a dual board. But it's also really trying to focus on how are we gonna teach our specialty to people so that they can do some element of primary palliative care themselves. I think a huge reason, or I know based on data, that a huge reason why referrals are not being made is that there is this provider bias and this misperception. And so we think that if I refer to palliative care, I'm giving up. And more importantly, I'm worried that my patient is gonna think that I'm giving up on her. And that is not the case. Again, if we are factoring in the definition and we're having more providers understand what the meaning of palliative care is, that will filter out into patients. And we also have to do our due diligence at teaching society and patients what palliative care really means and what that entails so that people don't say, oh my goodness, I'm getting referred to palliative care. Does that mean I'm dying very soon? Because the answer is more likely than not. No, of course one could have to define what very soon means. But I think we really need to overcome these misperceptions by teaching and by giving people knowledge. You know, the other thing about Juanac is that we hold to, we really, we are the comprehensive caregivers. We just feel like once we get a patient, that's it. She's ours and we are gonna give her the comprehensive care that she needs. We do her surgery. We give her chemo. We are involved in the end of her life. And we give her all the love and support we can through all of that. But the reality is, is that we are having more complex surgeries. We are having more complex, diverse treatment options with a whole host of different side effects. I mean, who thought years ago that we would have an ophthalmologist on speed dial because we need to, you know, call them when our patient is having secondary or side effects secondary to her immunotherapy. So, you know, the reality is things are expanding and our time is decreasing, right? Our, I don't know about you, but visit times are going down. We're moving towards RVU based, you know, how do we bill for a complex goals of care? You can, but do we know how to do it? We have to be taught how to do it. Having these conversations that are complex symptom management conversations, they take time. You know, if I had a penny for every time someone knocked on the door and said, she's got to get to chemo, come on, come on. You know, the timing is getting less and the needs are getting more. So it's a hard balance. And so, you know, saying to ourselves, we are gonna align and sort of walk hand in hand with a palliative care specialist when available, it really will help obviously first and foremost, our patients, but also us too. So moving away from specialty palliative care, which if your institution has it, great, and utilize it and perhaps, you know, find one person in your division to reach out to a person there and sort of form this link so that you have better access and a better connection. But for those that don't have it or want to keep the care strictly within the division, primary palliative care in GYN oncology can be done. And there's lots of different helpers out there. SGO is a great resource, particularly ConnectED has lots of online platforms and the access is written up there. There's an SGO palliative care committee that meets regularly, tries to, you know, provide providers with options of increasing their knowledge. They work to make sure that palliative care sessions are done at all of our national conferences. And there's great webinars. And actually one in particular, the Real World Palliative Care in GYN Oncology is a great SGO Connect webinar that is available. It has 15 different modules for free that you can go through. They deal with symptom management, a bunch of individual ones dealing with pain, GI symptoms. And then there's also how do we deal with complex patient or complex families in terms of communication and discussing goals. Then there's modules on hospice. So there's a whole host of choices that you can go through. And then they, if you link onto that, it also gives you direct links to previous sessions in palliative care that have been done at prior SGOs. I just wanna, you know, again, I've mentioned CAPSEA, the Center to Advance Palliative Care, which is, you know, a great resource with extensive information and resources for learning, not only for the clinician himself or herself to learn, but also as an educator to teach trainees and other people on the team. And you can see here, the target audience is for faculty, trainees, nurses, APPs, therapists, and there's lots of training courses. If I had more time, I would kind of run through the website with you, but just to give you an idea, there are so many resources. Part of my master's program has gave us access and we have membership to this and we have been able to do courses which have been very short, straightforward, to the point ranging from communication skills and have really been very helpful. Some of the things I felt like I knew, but they also gave me a different perspective on how to approach or look at things. So it can be very helpful. Many of you have probably heard of Vital Talk. It's a very well-known educational resource, which is, you know, an evidence-based program for clinicians really focusing on improving communication skills when you're interacting with the patient and their sometimes complicated family when that patient has a severe illness. There's online courses, there's in-person workshops, and it is very useful. The Northwestern University has another educational program, again, training physicians on competencies for quality palliative care and end-of-life care. And then actually, the University of Wisconsin has a free tool for surgeons that really helps clinicians, surgeons, improve their shared decision-making in a setting of high-risk and surgical interventions. And so, you know, a nice way to sort of get some ideas. Again, a lot of this we know, but always getting a different perspective can be helpful. You know, our fellows love to be in the OR and, you know, learning complex surgeries is probably number one on their list, but they actually really do want to gain training in palliative care. And they report limited palliative care training and they feel like their ability to, you know, deal with other symptoms or do end-of-life management, their training has been low. So, you know, some programs actually require a palliative care rotation. Again, this has to be at a place, if you have it as a specialty at your institution, but if not, there are written curriculums. And again, CAP-C, Vital Talk, SGO, all are excellent resources, not only for clinicians, but for the trainees that will one day be taking care of patients with advanced illness. So in my course, we ventured into understanding what is palliative like in other countries. And this led me to looking into what is it like in Africa, particularly Uganda, and I found the African Palliative Care Association, the website listed there, which I, you know, spent so much time going through and seeing. It's quite complex. It's quite comprehensive. It's pretty amazing. The APCA was actually established back in 2002 when 28 palliative care trainers from across Africa came together. They made a declaration that pain should not, that no human being should suffer from pain, should suffer or have pain, that it is a human right for every patient to have pain and symptom control. And it was founded in Tanzania in 2004. And actually Uganda is a pioneering, has a pioneering record in palliative care. And now many in Kampala in the capital is where many, the head offices exist for palliative care. So, you know, it's really exciting to be on this call to know that our colleagues are forging, you know, way ahead in areas of taking care of patients in terms of their overall patient and taking care of their symptoms and their pain. And, you know, the World Hospice and Palliative Care Day actually is a day that exists every year. It's the second Saturday in October. This year it will be on October 11th, 2025. And really the goal is to improve the quality of life. You know, the goal of hospice and palliative care is to improve quality of life for people that again are dealing with a serious illness. And so this is a day that's supposed to spread the word again, to teach people what is palliative care? What is hospice care? How do you get access to it? And in order to raise public awareness, they often have events. They can be a variety of different types of events. And one of those events is the MSK World Hospice and Palliative Care Day. I have been to four of the five. There are two days. They don't have what dates are coming up in 25, but it's usually the very end of September, early October. Two days, usually one in the morning, one in the afternoon. 76 countries were represented at the last one. And it's just such an amazing two days of speakers and also of multiple people providing information in the chats. There's actually sessions for people just to talk to one another country to country. And it's quite an amazing day where you feel quite connected to a world of people that are trying to take care of people. And it's really a fun day. In the last MSK day, I was given the opportunity to listen to Dr. Nitzamira speak. And he has written this book, which is The Safari Concept, an African Framework of End of Life Care, which is so interesting. And Dr. Nitzamira is actually surgically trained and started his career as a surgical subspecialist but got interested in taking care as he realized that pain and suffering and symptoms were way beyond what he even expected. He came to the United States and did some palliative care training at Harvard and now is very much a pioneer in palliative care medicine and gives beautiful talks. And he's from Rwanda, talks about a saying, when you are well, you belong to yourself, but when you are sick, you belong to your family. And he really promotes the idea of taking care of a patient means taking care of her and her family. But he also really promotes the idea that taking care of people, we have to be reminded that we have to take care of each other and do it as a team. So community and connection really do help a patient's outcome but really can also help us as providers as we embark on this wonderful, wonderful privilege that we get to do but can be quite challenging at moments. So doing it together and being connected can help us and, of course, help our patients. So that's all I have. I had 15 or 20 minutes. So whirlwinds there. And I hope that you're able to use some of those resources. And, of course, you can always reach out to me if you have any questions or need any further direction to some resources.

palliative care

Siobhan Kehoe

GYN oncology

interdisciplinary approach

patient outcomes

provider biases

global health