 So next, I'll introduce Gene Seller, sorry, is looking for you in the audience, who's going to give us a nice talk on early palliative care and kidney cancer. Thank you, Tracy. And thank you all for letting me speak today. I always like to start by giving a little brief overview of myself. And I have been in oncology since 1994. But actually, it was my first patient who was in 1990 that I met who led me to the world of oncology. He was 59 years old. He had just been diagnosed with a glioblastoma. Does anyone happen to know what that is in the audience? It's a brain tumor. It's the same brain tumor that Ted Kennedy had. And John McCain is battling it right now. And at that time, the medium survival for folks with glioblastomas was nine months. And that was what he lived. He was my dad. And I had never been a nurse, never been in a medical center except to give birth to my two daughters. So as one can imagine when your world is rocked out, I will always refer to the BC and the AC of cancer. And for those of you in the room who are cancer survivors, you can relate BC being before cancer and AC after cancer, because our world's never not the same after it comes into our life. In that case, for me, I was the stay-at-home mom, two daughters, two young daughters, I would say two and four. And I found myself back in school. And it was in 94 that I found myself working on the inpatient unit at High Point Regional Hospital. And the inpatient unit for me was working with cancer patients. So my career has been spent working with cancer patients not only just in the inpatient unit, but in 2004 I moved to the coast and worked with hospice and helped to build a hospice house and ran a hospice program for three years. And then in 2007 I came to UNC and have found myself, as Isaac Newton says, standing on the shoulder of giants because I am 4'11 and I do love the physicians and the other staff and colleagues that I have. But I have found that even today that my patients still have been my divine teachers and the ones that have taught me so much about living. And this is why I'm so passionate about palliative care and how we have to support it so we can ensure that all of our patients have quality care. So when we're talking about palliative care, I like to really bring it back to this slide. And this is one that comes from a tool gwandi at Harvard who's a surgeon and you've probably heard of him and if you haven't, I would encourage you to read the book, Be Immortal, because he talks about end of life and palliative care. But he has said that patients with serious illnesses have priorities besides living longer. And what that essentially means is that for most patients, the scariest thing about death isn't really being dead, it's the dying and the suffering that causes them so much concern. And you can see where I mentioned in the slides in terms of symptom management, quality of life, having the truth about your prognosis and relationships, but when we come right down to it, there's really a gap between what patients want and then what they get. And studies after studies have shown that when patients are interviewed and are given the choice, not when they're in the hospital, but if they're Medicare patients, for example, there was a large study done several years ago that asked patients, where would you want to live if it was at the time of death? And you knew that you could not be cured. Would you want to spend your last days in the ICU or in the hospital, or would you prefer to be at home? And most patients responded that if they could be kept comfortable, they would rather be at home. So we're working in really, there's a whole lot more awareness of palliative care now than there has been, but we know that conversations and getting them started are often difficult. And patients really don't want to talk about it if you ask them, sometimes even thinking that they're talking about end of life care means they've given up hope and that they're facing the inevitable. So it's a really hard balancing act and even for providers to be able to have those serious conversations. If the patient doesn't come first forward to ask the questions. And so oftentimes that there's just that dance that takes place where families are encouraging the patient or even the provider, don't tell my dad. I don't want him to know that this is metastatic or that this is serious. And even I can tell you and share with you that even when my own dad was faced with a glioblastoma back in 1990, my brother was adamant that we not tell him his prognosis. And so seeing it from the eyes of the patient and family versus seeing it now through the healthcare eyes, it's very, very difficult when you're trying to meet the needs of caregivers and to meet the needs of the patient and hope that the patient will be more vocal than oftentimes they are. So how do we bridge this gap between what patients want and then what they actually get? And what we're finding is that there's a lot of literature out there that's trying to engage patients in what we call shared decision making and helping patients understand that it's okay to ask their provider's questions and it's okay to bring up the subject even if the patient, even if the provider I should say hasn't brought it up. And then what's most important is having patients understand that their priorities and their goals of care are really important to get into to focus in terms of looking at the future. Palliative care does have a barrier problem. And I use this quote that I show here on the slide when I went to the Royal Center on the eastern coast of North Carolina to bring an awareness to palliative care and end of life care. In hospice care, I went to one of the county commissioners at an event and when he said, what do you do? And I said, well, actually I'm here to help bring awareness and to help build a hospice house. And that's exactly what he said, only what I left out was little lady, we don't want to put our money into helping people die. We want to put our money into helping people live. And so with that type of stigma, I'm telling you that it's still very real even today with what is palliative care? And I say that because it wasn't too long ago when I did a presentation on the same subject in the Outer Banks and before the presentation, I just thought, you know, I'm gonna ask people, what does palliative care mean to you? And the responses that I received, whether it was from, I'm very outgoing, so it would be from someone I met at the gas station. Excuse me, would you tell me when I say the word palliative care, what do you think? And I would get blank looks, I'd get beats me, or I don't know, my favorite response was from my mother. Now, my mother is still alive, she's 81 years old and she has followed my career throughout my entire, since I entered nursing school in 1992. And when I asked her, I said, mom, when I say palliative care, what do you think of? And she didn't say anything. And I said, mom, she said, oh, genome, everyone knows what it is. And I said, well, then tell me what you think it is. And she said, it's that thing that old people can get. And so it really surprised me because I honestly thought of all people that she would be the one cheerleader in my corner that could tell me what it was. Essentially palliative care, and I have it bulleted here, but I like to say it's comfort care and it's a living well. And it is not for people who are facing the last six months of their life. In many ways, it's for people when they first receive the diagnosis and when they're so overwhelmed and they're in that state of shock and thinking, am I gonna live? Am I gonna die? How am I gonna pay for this? What about my children? Who's gonna care for me if my treatment's not successful? It's all of those fears and anxieties that are welled up and I see people shaking their heads. Where it's just that grounding of having someone there that you can talk to and that can help you process and think how you're going to get through the day. Palliative care is, there's so many misconceptions with it because yes, it does include complex symptom management includes pain management, but it includes some other symptoms for such as not sleeping at night or possibly having night sweats or possibly having anything else, whether it's nausea and vomiting, whether it's you can't eat, whether it's that mental state again of the anxiety that's so paralyzing, but it's really trying to get your life together in a place where you can continue to live in a world where maybe what you thought you had ahead of you isn't quite the same as the new road that you're walking today. When does it begin? It should begin at the beginning and when I say that, it should begin when you're going through the initial diagnosis. I'm gonna give an example of a patient that I've worked with recently, 27 years old and he was diagnosed with a glioblastoma and his family of course is the same as every person in the room who's received the words it's malignant. It just hits people different at the different age that they are and for a 27 year old, I found with him it was difficult because of the stigma and the fact of his brother didn't want people to know, they wanted to keep it off of Facebook, the patient was struggling with wanting people to know but was still struggling with the thoughts that he might be dying if the treatment wasn't successful and so I encouraged his mother to reach out and I thought this would be perfect to ask for a palliative care consult and she didn't go to the provider, she went to the nurse and the nurse and this happened several months ago, the nurse shut the patient's mother down and said it's not appropriate at this time and it was such a, for me, it was such an eye opening moment because it shows how we still need to keep this conversation going and we have to continue to educate people because yes, he was very, very appropriate for a palliative care referral and this is 2017, so you can see. So why is this important? We really do have the facts that palliative care, when it's provided by a team, it can reduce patient's symptoms, most important it can lower depression, increase patient and family satisfaction, helps patients to feel more informed about how to manage their symptoms. What's not on the slide is we're seeing that palliative care can actually help prevent patients from going to the emergency room as often as they do. Palliative care can help patients if they're staying at home to be at home and again, this is before hospice but this is at that time of uncertainty. Palliative care is appropriate for patients even in the bone marrow transplant setting and when I use that as an example, because I know of a friend of mine who had a bone marrow transplant several years ago and she's an oncology nurse and in doing so, she went through the procedure and I think some of the hardest things that she heard were the comments that were made to her from various people in terms of how she managed her own anxiety and even some of the providers thinking that she'd have better skills to manage the anxiety when in effect she didn't and when in effect, palliative care would have been very appropriate for her but it wasn't offered. I love this slide. There's no easy way I can tell you this so I'm going to send you to someone who can and that's coming from the physician and I know that that's funny but at the same time is we tiptoe around these conversations sometimes and so that's why it's just another reminder of how it's okay to say I really do need to be a part of this care and really do need to understand how I can get the best care to deal with what I'm going through. This is an example of the team and I put the nephrologist in here but I also, it can be anyone, it can be somebody who's dealing with metastatic or renal cell, carcinoma, it can be somebody dealing with lung cancer or ovarian cancer but it's appropriate for anyone that's dealing with a serious illness and typically the team is the physician, of course it leads the plan but then the nurses, the chaplain, social workers, counselors, volunteers, pharmacists and therapists and it does indeed take a village. This is why it's so important and this is where we bring in what a true model of quality of life is when we're always talking about increasing the quality of life in our patients. We're looking at the physical symptoms but we're just not looking at that, we're looking at the psychological symptoms back to the anxiety and the depression. The social symptoms, financial toxicity now is the biggest buzzword that we're hearing because we know that with cancer comes an incredible financial burden and that today people even with insurance are underinsured and many patients are having to go to their savings account and still there are not a large number but there are some patients who will, who their cancer diagnosis will bankrupt them so we really have to try to find resources again earlier in the diagnosis than later to help with that, caregiver support and the spiritual side of support. So we have already spoken about the value of palliative care and why I think it's important but this is coming from studies in terms of improving the quality of life, less hospitalizations. There's a study that came out from Jennifer Timmel looking at patients with non small cell lung cancer and there was a 25% longer survival in these folks who had palliative care integrated earlier into their disease process. The focus of palliative care is not just symptom management but it's also the conversation and that important conversation to get people talking not just between the physician and the patient but the patient and their families and again patients can remain at home. One of the most important books that I have found with dealing with patients is this one by Ira Byrock. I don't know if you've heard of it but the four things that matter most and this is a physician who has done a lot of work in palliative care and working with patients and I've found that just being able to say these conversations in these statements please forgive me, I forgive you, thank you and I love you. These are statements that are so healing and I've seen it just in working with patients in palliative care but to see relationships that can be healed at a time when you think all is lost, it's pretty powerful. This is a book I would recommend. So when we're getting ready to wind up I can't end the conversation that we're having now without bringing in hospice care and palliative care is different from hospice care but it's important to note that care for people at the end of life when the physician thinks that life might be less than six months is when hospice is appropriate. And hospice, I think one of the most beautiful aspects of hospice is it really does focus on the patient and the family and trying to enable the patient to remain at home during their death and it's again provided by a team and when I was doing hospice care I can tell you that as much as I loved working on the unit as an oncology nurse oftentimes I found that what was most meaningful for me was being able to listen to my patients and to hear them because if you want to have authentic conversations you're gonna have them typically with patients who are facing what they think might be the last six months of their life. And I think what it really brought is the power of human connection and what it can do not just with you and your own relationships and what it can teach you but what you can learn from the patients. One of the stigmas with hospice is that you have to be at your, I should say the physician has to certify that you have six months or less to live but I can tell you from having run a hospice house and a hospice program that it was always some of the happiest times when I could go to patients and say I'm sorry but you're no longer appropriate for hospice and we're going to have to discharge you from the program. So there are those instances when patients do find that their medications are being managed and that they are finding resources for food and comfort and the social aspects of life that maybe they don't end up dying as one thought that they might do. And so it's really difficult to really be able to say how long someone has to live but we know that sometimes we can't explain things when they happen or when they don't happen. The reason for the six month benefit is that there's a Medicare benefit that's associated with hospice care and so Medicare is who drives this. They pay a per diem per day for this care and so every three months it's reviewed by the physician to ensure that the patient is still appropriate. Who's eligible for hospice and it's again advanced disease with the expectancy of six months or less but I've seen patients that are far exceeded that. They have a poor functional and nutritional status. High morbidity and mortality markers in other words there is again the thought that the patient is at the end of life and that or approach in the end of life in that active treatment is no longer going to be requested and the patient or whoever is their primary advanced directive person has to give consent that they agree to this and that they acknowledge that there's the understanding that there's six months to live or less. And for payment sources as I said hospice is funded by Medicare, private insurances and they don't turn anyone away based on their inability to pay. So now you know what palliative care is and you can talk to your physicians if you think that this is something that you might be interested in. But I think in leaving I would just like to remind you of a quote that I have that I love and it's by Oprah Winfrey and it's very simple she reminds us to just breathe, let go and remind yourself that this very moment is the only one you know you have for sure. So as you leave today let's honor each other and let's honor ourselves most important let's go out and celebrate the beautiful life that we have. Thank you for letting me speak.