Betty Ferrell discusses the importance of advanced care planning discussions with patients and their families while offering various models and tools to aid providers with these often difficult conversations.
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Welcome back, everyone from your break, whether it be your lunch break or was there your mid afternoon break for you for those of you that are in the central standard time. So, um, I want to introduce myself. My name is Jen Bow on the system wide oncology nurse educator here. Ask for help in San Diego, California and I have the privilege and honor to introduce our next guest who will be talking about about advance care planning. Dr. Farrell Better. Betty Ferrell has been in nursing for 40 years. Her clinical expertise and research are focused on king management, quality of life and palliative care. Dr. Farrell is the director of the Division of Nursing research and Education and a professor at City of Hope in Duarte, California She is a fellow of the American Academy of Nursing, and her publications have appeared in more than 400 peer reviewed journals and texts. She has principal investigator of a research project funded by the National Cancer Institute on Palliative Care for patients with solid tumors on Phase one clinical trials and as principal investigator for the end of Life Nursing Education Consortium Project. She directs several other funded projects related to palliative care and cancer centers and quality of life issues. She was co chairperson of the National Consensus Project for Quality Palliative Care. Dr. Farrell completed a master's degree in theology, ethics and culture from Claremont Graduate University in 2000 and seven. She has authored 11 books, including the Oxford Text Textbook, A Palliative Nursing, published by Oxford University Press Fourth Edition, published in 2000 and 15. She has also cool, author of The Nature of Suffering and the Goals of Nursing, Oxford University Press in 2000 and eight and Making Healthcare Whole, Integrating Spirituality into Patient Care. And that is Templeton Press 2000 and 10. In 2000 and 13, Dr Farrell was named one of the 30 visionaries in the field by the American Academy of Hospice and Palliative Medicine. And I would also like to add that earlier this year, Dr Farrell was honored with the Walther Cancer Foundation, Palliative and Supportive Care and Oncology and Doubt award for her work to unite oncology with palliative care. The help Clinicians deliver quality cancer care. So welcome Dr Betty Ferrell. Eso I was saying that as a new graduate nurse I worked on the 3 to 11 shift, and one of the things I always remember is that in the evening shift, patients would come back from having breast cancer surgery, and as we were lifting them from the gurney into the bed, I would see women reaching up and feeling their chest because what they were, what they were trying to do is to to say, Did they take my breasts? And it was so powerful and as I thought about it years later, that what an incredible time it waas that women had so little say about their choices, for the fact that we would take someone into the O. R. And do a procedure without fully informing or consenting the patient. And so one of the good things that happened in our field over the 40 years is that cancer patients have really come to expect that their voices will be heard and that we take time to listen to them and to understand what their preferences are. And certainly there is no time that's more important in terms of honoring patient wishes, as when our patients are reaching the end of life and so we'll talk today about end of life planning and what are some of the decisions and what are the ways to advance care planning that we have tried to help our patients as nurses, to have a voice and to really see that their remaining time respects who they are as people and their wishes? So what is advanced care planning? So that's your planning is this is a definition. It's a Siris of conversations between patients, family members and clinicians to discuss the patient's values, goals and preferences for treatment. And that's a great definition. It's very encompassing. And as I look at these words, is a nurse. The things that come to my mind is it's a Siris of conversations. This is not one conversation. This is not. Let me go into the room and get the patient to sign a D n r or ah, pulsed form. This is a Siris of conversations that begins the first day that we meet this patient. If you're the oncology nurse in the clinic and you're about to give the patient their first dose of chemotherapy, you're asking the patient important questions. Tell me about yourself. Tell me about your family. We get to know the patient. And so, through a series of conversations, we are able to really know this person is before us, know what is important to them and know something about their culture, their religious beliefs, their decision making in their family. So it's a series of conversations also in oncology. We quickly learn that the patient may be the primary focus of our attention. But how many of you would say you spend as much time orm or with family members as with the patient? Because it's always, you know, the spouse, the daughter, that well intended family member who then stopped you in the hall to say, You know what? What are the doctors saying? You know, of course, my mother wants more chemotherapy. Eso We are conversations in advance care planning very much involved the family, and it is about values. It's about goals, and it's about preferences for treatment. So these are important ideas. So if this is such a good thing, advanced care planning sounds like such a good thing. Then why is it that across our settings we still often have limited use of advanced care planning? If we had the time today to do a Poland to ask all of you. You know what percent of your patients in your setting have completed advanced directives? I would imagine that it would be much lower than we would hope for. Across most oncology settings. It is not at all uncommon to have only 30% or even less patients, even though they're dealing with a very serious illness of cancer to have a completed advanced directive. And so why is this? Why would people not want to complete an advance directive or have a conversation about advanced health decisions? Well, on this side is the summary of what we know that people want to maintain hope. And often patients will say, You know, no, I'm not ready to think about that yet. I just want to keep completely focused on the cure. Um, often nurses or other clinicians will say they don't want to raise these topics because they don't want to upset the patients. Andi, these are sensitive conversations to have. We want to avoid stress on proxy decision makers. You know this husband who seemed so distraught at the bedside, and it's almost looks worse than this wife, the patient You know, we really don't want to approach that husband and start talking about withdrawal of life support decisions or de in our discussions because he's already so overwhelmed. There is a very important belief that talking about death will hasten it. I can remember now a little over 30 years ago when I moved to the state of California and some of my first studies that were being done at the time in patients homes and we have a large Latino population, and I remember very well learning quickly many of these families as we were trying to just consent them to participate in a study on pain management at home. But our consent forms said cancer, cancer, pain. Many patients and families would say, No, we can't sign that or no, don't don't don't say those words and a two first I thought, Well, this is crazy. Of course, they know they have cancer, they have their at the point of having significant pain. But they would explain to say the word cancer in our home is a bad omen. Well, it will make death comes sooner. And so it was such an important reminder that we have to be very respectful of individual beliefs and values and preferences because culture is so important and respecting diverse populations is so important. Um, the last thing here I've had a recent recognition of how important this is in a study that I'll describe a little bit later. But that is the belief that clinicians will give up on them. So patients and families who will say, Oh, no, we don't want to talk about that now. We don't want to sign a this directive now, because if we start thinking about things like that, you know, the doctor will think we're giving up and, you know, we we want the doctor to keep looking for more treatments for our mother s. Oh, please, no, we don't want to talk about that yet. So the important thing is you look at this slide is just to realize that there are very real reasons why, in just being involved in events that getting discussions or being the patient who has been asked to consider advance care planning could be actually quite complicated. But what we also know through a lot of evidence over the last 20 years is that there are some very positive outcomes of advance care planning. It's a very important good things can happen when we devote ourselves to enhancing advance care planning. One is the avoidance of hospital readmissions that if we're clear on the goals of care, um, then we can help those patients families to stay at home, for example, instead of feeling that they need to come back to the hospital, there's a growing body of evidence about reduce costs or days of hospitalization, a reduced outpatient and emergency department or urgent care use and avoidance of skilled nursing transfers. So for our patients that air in long term care settings or extended care settings, that if there's a clear, advanced directive that this patient is not going to get mawr disease focus care, it helps them to stay in place to stay into their setting of care. Now there is an abundance of literature, an abundance of evidence, and again, I love seeing information like this because in oncology, as an oncology nurse, I can remember where we had very little evidence for most of our practice, there simply were not studies. There was not. There weren't clinical practice guidelines. It really was not a foundation of knowledge to guide our practice. And that isn't true for most of what we do in oncology. We have great evidence on things like pain management and Disney and management and bereavement support and good communication. There is a strong evidence base for practice and this. When I was preparing to talk about this topic, I looked into the literature and even focusing on Lee on systematic reviews. So Onley on papers that were published that had already reviewed a number of other studies. There were more than 80 systematic reviews covering more than 1600 publications about advance care planning. So great work out there, and we know a lot from him. Some of the things that we learn from looking at this literature are that there are a lot of factors that influence advance care, planning, legislation, policies within our organizations. Many factors influence how advanced care planning happens. Um, there's also a great deal of evidence that advanced care planning could benefit the patient because of improved communication about their end of life care, documenting preferences, dying in a preferred place and also health care savings. And there's also some information that even tells us you know which factors are most important, and so some of these things are. The factors for success are when there's repeated information, interactive discussions when we use decision AIDS, so graphic materials and other ways to help people make decisions and when the interventions really target stakeholders. And so we're also learning not only that advance care planning is good and important, but there are better ways to do it, and it's certainly always comes with the conversation. I would always also imagine that every one of us in this conference today can think of ways to not do advanced care planning. I have personally witnessed I remembering bringing my parents in for health care at the end of their lives. Those horrible situations where an admitting clerk, you know, sort of who was handing out forms. Here's an insurance form. Here's a form about Do you want TV in your hospital room? Oh, by the way, here's an advance directive form, and I mean, what a terrible way to think that we would have a thoughtful conversation about important life decisions by having a clerk Candace Reform. And so what we now know is obviously advance care planning is a relationship. It involves the patient talking with a clinician about very important aspects of their life. There certainly are some continued challenges as we look at 2020 and beyond. In the use of advanced care planning, there are things such as literacy levels. Andi. This would be an important thing for all of us to do. Go home on next Monday, go back into your own work setting and pick up the advance directive forms that you're using. What is the literacy level? And are their patients that you think of in your studying that perhaps the form is simply too complicated or too high literacy level? There are also up in misunderstandings about legal aspects that people are really confused. Advanced care planning documents, which should be an expression of your wishes about end of life care with other legal documents. Um, there are certainly questions about who is the decision maker. Is this patient competent to make decisions? Who should be making the decision if the patient isn't able to do so for themselves? Certainly cultural beliefs. No patients, um, come often to us from countries or from areas of our own country, for whom they have never been invited to participate in the decision making process about their care and certainly religious beliefs. I have in my studies over all of the years seeing so many examples where patients will say, You know, don't talk to me about dying It's in God's hands on Lee God will decide, you know when it's my time to go and those air really important things for us to hear because if we disregard the patient's religious beliefs, we will not be successful in our advance care planning. And absolutely, I would put money on the table that everyone on this call has had an experience of family conflict. When it comes to advance care planning, just when you think you've made progress, you've had a patient in your clinic or your hospital. Clearly, this patient is declining. Um, this patient really needs to We really need to shift the goals of care and be providing palliative care for this patient. And then the son or daughter from out of town who hasn't seen their parent in months appears and suddenly wants to stop everything. How dare you, you know, give up on my mother of course we want dialysis. Of course we want a ventilator. Of course, we want the I C u. And so family conflicts become very much a part of what we do. I think the most critical factor and something that we have learned over all these years is that we need to focus less on the form and more on the conversation. And often, quite honestly, it's about the form you know who's gonna go in and get the form completed. Have we got in the form? Um G the you know, the residents coming up to the floor. Maybe we can get her to go in and, you know, get the form so all about the form. But as you all know, it is so much more important that it's about the conversation. Um, it's about that bedside dialogue. You know, Mr Smith, we are trying our best to care for you, Um, in the best way possible. And part of that is for us to talk with you about what is most important to you. You know, you've your doctor shared some really difficult news today about the status of your cancer. And now is the time for us to really talk about some decisions you might need to make, So the conversation is really the key. Now there's been some recent work that has defined advanced care planning, and this came from ah, focus on adult. Certainly advanced care planning is also important for our pediatric patients. But this came from a Delphi panel of experts published in 2017 on defining advance care, planning for adults and a consensus definition. And I wont read every word here. But I think what you can see is clearly the words that sort of jumped out to us. Here is a process that it's about understanding and sharing about learning about values and goals and preferences. And the bottom line is, what this is really about is to ensure that people get the kind of medical care that's really consistent with their values and goals and preferences. I when I look at the definition, I am always reminded of the face of my father. My father was a wonderful man, and he lived with me the last five years of his life. He was 89 years old, Um, and my father had successfully avoided the health care system pretty much his whole life. He My father was a poor quote dirt farmer in Oklahoma. He dropped out of school in second grade in the height of the Depression. He, um at the age of in second grade, he had to start supporting his family When his own father died. He was the breadwinner with his brother to support five sisters and a mother. Um, he then was drafted into the army and served in World War Two. Um, came home lived a wonderful life, is a construction worker, and then a maintenance man at the end of his life, Married to my mother from 55 years. So in his entire life, 89 years of life, my father had entered the health care system three times, Three times he was from, you know, that sort of the era of, uh, you just, you know, he just didn't didn't need to go, right. So three times in his life, he had been in a hospital setting, So my father then became very ill. Actually, quite suddenly, he actually had been very healthy. But age 89 he, over a matter of a few days developed a serious respiratory infection. Um essentially had become septic in just a very short order. And, of course, we transported to the hospital not really knowing what was happening, not knowing if it was reversible, knowing that a week ago he was out walking the dog and enjoying life and, you know, quite quite functional. But once he got into the hospital and we realized that he waas now skeptic, um and even though he actually was stabilized and began to have some treatment, a decision was needed to be made about what what was, should we? Dio and, um, the options were really to provide comfort, care to not attempt any other life prolonging measures. Or if we were to be aggressive about his disease managed care, he would likely require many, many weeks in some assisted care facility with ivy, very difficult antibiotic regimen and all of the things that go with that. So we, of course, had to think about all of these factors. But ultimately, I will always remember sitting with his team, which was a teaching hospital and so sitting, you know, there with some very young medical students, residents and talking about my father's care and of course. These young, you know, very compassionate, wonderful young physicians were just so eager to give me a list of, You know, all the things we have, we have a nice see you. You know, we have aggressive antibiotics. We have dialysis. If the antibiotics or too much for him, All the things we have to sell. Right. Um and I tried and tried Thio, you know, just think about what was best for my father. But at the end, I was guided by the words that you see on the screen. What could we do to ensure that my father will receive the medical care that is consistent with his life with his values? And so I said to this, you know, young team all meaning Well, you know, my dad has avoided the health care system for 89 years. What has been important to my dad is to be independent, to be outside with this dog, enjoying life, and so no spending the last weeks of his life in a long term care setting getting I V antibiotics just does not seem like the good choice. So, you know, I share that to say yes. There's a lot of documents and literature and evidence of advance care planning. But at the end of the day, it really comes down to knowing our patients and honoring who they are as people. And how can we make sure that the care we deliver honors who they are as people. So how do we do that? What? We do that through good communication? Um, And again, this is day to day communication. This is not just a conversation saved at the very end of life. It is that bedside nurse giving chemotherapy. It is, you know, the nurse who does that initial admission or when the patient has been admitted to the ER because of Disney. And things were changing that the conversations we have are so important, you see on the screen now a series of questions and these are examples of questions that will help us know our patients and provide the most respectful here. So, for example, what is your understanding of your illness now? I often say things like, Well, what did the doctor say to you last, or can you help me by catching me up on what you understand about what's going on? What Have you been told about the treatments that have been planned? What are you hoping for? What do you think this treatment might do for you? What do you think will happen if you're no longer getting this treatment? And how do you make decisions about care? Who helps you in this study? I'll say a little bit more about in a few minutes. Our study on face one patients, you know, it's just always sobering. You're sitting with the patient, the patient, you know, Everybody said, Oh, you know, we know this patients really declining. We don't think the treatments helping her. But she just keeps insisting on, you know, more treatment or treatment, and then you sit down to talk to her, and you start asking these questions and time after time. You know, the patient says, I know that I'm not getting better, you know, I know that this this is going to get me probably soon, But you know my daughter. It's my daughter that I worry about, and she just wants me to keep trying, right? I mean, when we asked these open questions and then we really get at the heart of what's happening with this patient? You? No way. No. Then what we need. We need a family conference, You know, we need to pull in our social worker. We need good communication to really foster. You know, what does the daughter want and believe what does what is important to this patient. So conversations and communication is so vital. I'm going to share with you now. Video clip That comes from the work that we've been doing in our element curriculum where we teach nurses a lot about communication skills, including the role in advance care planning. And so what you're gonna see now in this video is a simulation of a nurse entering the patient's room to have the kind of conversation that we would hope to have about advance care planning. Okay. Yeah. Good morning. How are you today? Good. Good. I'm feeling a bit better. Are you breathing? Feels more comfortable. Yeah, you know, it's better. I would say it feels if you're able to catch your wind. Well, yeah, not a short winded is when you came into the hospital. Definitely a little better able to make it back and forth to the bathroom and up and down the halls without getting too tired or too, too short of breath. Yeah. Yeah, mostly. I would say it looks like you're ready to go home. I think so. I think we'll continue the antibiotics. We started here and will keep the nebulizer treatments going for at least the next week. And then I'll get you back in the in the clinic. Um, sometime in the next 5 to 7 days, we'll check on you. Okay? Does that Does that sound good to you? Yeah, the nebulizer. How many times do I have to take it? I'm gonna write out all of the instructions for you, but four times a day. You know, when you wake up in the morning and a little bit before lunch and in the afternoon before you go to bed. Um, so we'll get those in just to help get your lungs a little bit opened. And hopefully that will get rid of you know, the the rest of finishing the treatment for pneumonia. We'll put you on some pills for the antibiotics. And you the chest X rays look much better. And so you're doing better. Oh, good, good. I'm happy to know that Well, I'm glad way have other things we should talk about before you leave. And we can wait for your husband if you want, but really, about your overall, um, lung situation. You know, my husband can't really take time off. He can only come to pick me up. So it's okay now for us to talk. Well, I think it's important for you and your husband to have a conversation because anyone with a serious illness and your lung illness is serious. Um, serious. Well, it is because their things were going to do to keep you as healthy as we can for as long as we can. But there's some things about your lungs we can't fix, but we're going to keep them working well for a while. But if you were to get E wouldn't be stressed. But it's good to be aware that there are problems with your body, so we're gonna have to take, you know, look at you a little bit closer, moving on so that we don't have issues with pneumonia. Probably adjust your meds throughout time so that your lungs continue to function optimally. But I think with any illness and I say this to everyone. I follow that it's important for you and your husband and your family to discuss things you would want or not want. If you were to become sicker in the future, and it's best to have these conversations while you're feeling well, then in a crisis, do I need to get a lawyer now? You won't need a lawyer, but I think there's paperwork that could be done to do advanced directives. And what advanced directives really guides us into what your wishes and values are? Um, would you would if you were to get sick? Or would you want to be on breathing machines or have artificial nutrition or have CPR done if we can't fix what caused it? And so it guides us is to what your values are and what you want, and it takes the pressure off your family because they know what they are rather than in a crisis. Everyone saying, What would mom want or what should we dio? And so I think, why signing the papers important? The conversation is the most important thing, and I'm not asking you to make any decision today. I'm asking you and your husband and the rest of your family to take some time. Think about what are important to you. If you were to get sicker and everyone's different. What? Their values and goals air different. So I will have before I leave today, I'll drop you off the form toe Look at and I just say, You know, next time we see each other in clinic, why don't we spend five or 10 minutes and review that? And you can tell me what you and your family thought about? And if you've made a decision, I'll entered into the medical record. And if you haven't, we continue having this is an ongoing conversation. But I think it's just good care s so that we can follow your wishes throughout this illness. And hopefully that's going to be for a long time. Okay. Do you have any questions for me? Yeah, I dio eso. My first question is that when I when I talked to my husband and my family about it, um I'm feeling a little like I know I understand what you're saying, but it is still, you know, all this unknown, like my husband and my family. How they're going to, you know how, um, I going to start the conversation? You know, I think probably the easiest way. I'm happy to talk to your husband if you want. If you can have time during the next appointment, I think the real thing here is that we get an understanding of what's important for you and what is important in your decision making about how you want your life to go. And so for some people I see, every day of life is is important. And for others, if they can't carry on conversations can't walk. Their dog can't do the things that give them quality. They wouldn't want to live that way. And so this lets us have that conversation going into it as to what do you value the most. And so And I think having the conversation as again is the most important thing. You don't have to make a decision, but if you don't have the conversation, none of us know what those values are. And so I think it's important just to start the conversation. And, like I said, I'll give you the resource is I'll even give you one or two websites that may even help you discuss this with your Children. You know, I think that makes me feel a little much better, too, because just the fact that what I want, what my wishes are is being considered. I think that that makes makes a difference. And it can be uncomfortable conversation, but it's it's a lot more uncomfortable if no one ever talks about. That's true. That's true. Yeah, It makes me feel a little better. Can I call you if I need any help? Absolutely. You know, I think we're gonna be going on this journey together, just trying to make sure that you feel as good as you can and that we can keep you out of the hospital in the future. Okay? Okay. And I'm gonna just go out and get your discharge paperwork together. And, um, I'll see you within the next 5 to 7 days. Alright? Okay. Thank you so much. And I'll get my husband the next time when I come. That sounds like a great idea. And he and I both can talk with you. Excellent. Okay, Take care. All right. Thank you so much. And I'll be feeling better with E. I think you're gonna find every day gets a little bit better. Take care. Okay. Thank you so much. Thank you. Bye. I hope you enjoyed that video. Some of you may recognize the nurse in the video is Patrick Coin. And Patrick is also a longstanding oncology nurse, and he directs the power of care program at the Medical University of South Carolina. I hope from the video that again, it really reinforces. What you saw was this is not about a form. It's about a conversation. It's about a relationship, a trusting relationship. So there are many outstanding models and resource is that exist to do this work of advance care planning. I've listed just on a few of these on this slide respecting choices. The Five Wishes Document the Conversation Project, the National Hospice and Palliative Care Organization carrying connections, Olst. There are many forms, so there are many ways to help us have these conversations and document patients choices. S So what is the conversation? As you saw it involved listening. It's an invitation toe. Understand? I want to understand what is important to this patient, and it's an opportunity to learn more about the patient as a person. We also know that some key principles it's an ongoing conversation that needs to be initiated early. We're interested in knowing more about you and what's important to you. And then in one of our clinic visits coming up, I'd like to talk to you a little bit more about what is most important to you and support of your family preparing for the conversation rather than just springing it on a patient. So, for example, we're at a time when you might be needing to make some difficult decisions about treatments. Next Thursday, when you're in the clinic, I'd like us to have a few extra minutes that we might really talk about your treatment choices ahead. Uh huh. And then to actually have the conversation. So I'd like to talk to you today about some important things, such as who could help make decisions about your care. Then we're at the point of making decisions. So this is the point where we might say, I feel like read a fork in the road. We need to really help you think about what choices should be made next and then revisiting decisions. So you know, often patients will make a decision. Oh, of course. I want to keep going. Of course. Just, you know, sign me up for any try a will do anything. But this might be a time to say, You know, Mrs Jones, I remember a month ago when you were telling me about your grandchildren and how involved you are in their lives. On that you just wanted to keep me in a fighter so that they would they would know their grandma didn't give up. Um, but also, I know the last few weeks we've shared a lot about what a tough time it's been for you. How you're having a lot of paying a lot of trouble breathing. I wonder if we want toe sort of talk about those things again. Um, wondering if your any of your thoughts have changed about your goals of care? Um, I'm gonna also share a second sort of brief video clip in the person you see in this video clip is Judy Pace, also someone who may be very familiar to many of you. Judy is also has been an oncology for her entire career and has been a leader in pain and palliative care topics often come up about whether tube feedings should be initiated or, once they're already started, whether they should be withdrawn. The same is true with intravenous feeding and other interventions. And the way we communicate with people, particularly the older adult, is crucial have been with older adults who have the assumption that if the doctor tells them that they need to have one of these interventions, they need to have one of these interventions. But again, remember that the older told grew up with a very different experience in our health care system. They've seen amazing explosions in knowledge and in techniques, and and they lived at a time when Children routinely died of very simple infections, and now they've noticed that technology has allowed people toe live longer. As a result, there's often the assumption that technology tubes and wires and dialysis and implanted defibrillators will somehow improve their life. So honest communication is crucial. It takes time, and it takes a lot of listening toe understand their beliefs about the advantages of starting any of these kinds of therapies. A Z I mentioned it could include dialysis or tube feedings or even implanted defibrillators or pacemakers. Is it going to improve their quality of life? So we ask questions and we listen and we take there clues from their conversation so we can help direct those conversations to find out what their goals are, what their wishes are, and then we can help guide them in making these difficult decisions. So listening to Judy and Patrick, I think, to me is just such a reminder that good communication about advance care planning being involved with communication with our patients is just a fundamental aspect of good nursing care. Also, as you see on the next slide, advanced care planning, Concertante Lee be more challenging and have higher uncertainty. Um, in situations such as diseases where there's rapid changes in the patient's status, for example, humus, logic, malignancies, where we may feel that the chances of this patient's cure response to treatment are very good. But then things changed, and suddenly we have a situation where patient probably will not survive their disease or treatment. Another key principle is the notion of end of life planning versus beginning of illness planning. If we wait to have these conversations until the end of life, we will not be successful. We must initiate these conversations early. I wanted to share with you a resource. This is a nurse who's in Oregon. Psycho Azumi. And she and her colleagues have done some wonderful work in advance care planning from a nursing perspective. So I really love her work. And this paper particularly, came to my attention. A Zai was preparing because it published in the Oncology Nursing Forum because it was done on advance care planning with nurses in transplant unit and so one of the toughest clinical area. So I really would encourage you to read Maura about psychos work. Say Koizumi. The next slide comes from her work, and what she has illustrated here is again. We start at the top with just naming a surrogate decision maker. That's a first step. Just who would make decisions for you. And then we move toward completing an events directive, and that is sort of part and parcel with having some conversations about what are your goals, Andi. Then perhaps as patients are declining or making decisions to remain at home, depending on the state and circumstances, we might offer a post form. And then, of course, there are decisions to be made at the end of life about what is the preferred place of death. Or certainly we hope to be initiating palliative care much earlier in this trajectory and also getting hospice care introduced much earlier. So the idea is, it's a continuum I wanted to just briefly share with you some results from a study we just completed a few months ago. This is a study that's impress right now, and it was a study that was funded by the National Cancer Institute on integrating palliative care for patients on Phase One trials. So I know all of you as being an oncology. Know that patients who are on face one trials are sometimes a real challenge because these are patients who have very late stage disease. They've exhausted traditional therapies, and yet they tend to be patients who still want to stay focused on the treatment. So, you know, sign me up. I want to be on the phase one trial, and so this is a study we did at City of Hope as well as at Johns Hopkins, and I wanted to share with you a couple of results. This is the survival data We had almost 500 patients in this study with solid tumors on Phase one clinical trials. And the most important thing I want to share with you here is this is the survival curve, the average time of survival or the median time of survival from the time the patient started a face one trial until their death was 10 months. And yet you can imagine these air patients who didn't want to talk about advance care planning all their attention was on the face. One try a while their clinicians were focused on the face. One trial. And yet while we're all being silent and not talking about advance care planning, what's happening to the patient, they're declining and they're getting close to death. In this data, you can see 479 patients on Lee, 39% having events. Care directive. Many of them were still full code, very low rate of hospice enrollment. Um, and as I said, median survival of only 10 months also a very small percent ever referred to palliative care and a little bit more. But still, even a low number were referred to social work, which could be such a valuable resource. So I share that data with you to say, in oncology, we've made some advances, were better in advance care planning. But there still are so many opportunities for us to improve. And one of those is this example that I shared with you from our face one trial population, our patients that are continuing to focus on disease therapies that may really need ah lot of work so that we can improve that outcomes of their care. So I want to say the last few minutes for questions. But, you know, just to summarize everything that we've covered today, I think the most important thing is advanced care. Planning is a conversation, and it's a relationship you saw in that video with Patrick that when a patient trust the bedside clinician when they have developed a relationship, when you've listened to their stories and you know their family and you understand they have young grandchildren or a daughter about to be married, um, that they're making tough choices about life prolonging therapies, and so it always is about good communication. It is always about the relationship, the sacred relationship between a patient and a nurse so I'm going to stop there because I know there have been some comments in the chat, and I wanna make sure that we have a chance to hear some of those comments and also questions that you might have. Thank you so much, Dr Farrell, for talking about end of life planning. That was an excellent topic. Um, I think this is such an important part of our patients care. And I think it's great that you talked about how important it is to focus on the patient and inviting them into and to having a conversation, finding out their preferences, what they need and what is important to them. Because we asked health care providers make it too caught up on the treatment side of things and may not realize if this does not align to our patients goals. Eso I'm looking at here for the questions that are coming in and I don't see any, but I know that on our comments section, um, there was a question that was asked, What challenges have you faced in discussing advanced care planning? And some of the responses are someone said a patient was unable to accept the realistic outcomes. Um, another attendee said that they have the same issue. And then another attendee had mentioned that they had a patient with a terminal diagnosis and a very poor prognosis, Um, which declined significantly and they couldn't make decisions for himself anymore. Um, the family still wanted a full code status and refused to change goals of care despite a conversation with the attending M. D. The oncologist and the palliative care team. Then the patient ended up being coded Onley. Then the family agreed to have the DNA, our status, comfort care measures on Lee. And then it looks like another attendee and said that some patients do not accept this conversation regardless of how thoroughly it is explained. Even if the patient does not have a terminal disease, right? Absolutely. I think all of those comments are so real, and definitely when we talk about basket planning like we know it is not going to go well, many times it is just not despite your very best efforts. Um, you know, something that I heard probably 2030 years ago, uh, in my practice, and I've always remembered it is, you know, when you and I stand at the bedside, right? Or when you're sitting in change of shift report or you picked up a patient's chart. You know, you and I immediately see oh, patient with advanced pancreatic cancer who now has very widespread metastases to the liver patients. John does, like we all know where this is going. Right? Um, and then you walk into the room and and, you know, here's the daughter saying, um oh, I'm so glad we're here. You know, we've come to your cancer hospital because we know you know, you all are the best, right? So the thing that I've come to realize is that, you know, we're clinicians, and we have seen this, whatever this is. You know, um, we have seen this hundreds or maybe thousands of times, right? For this patient and this family, this is the first time, right? They haven't had the experience that we've had. They don't know what the future really looks like. And so, of course they would be staying, you know. Yes. We want everything. Yes, we want transfusions and dialysis. And yes, you know, we want everything. Um, you know, increasingly, I hear people say, Well, you know, my dad. He's only 92 right? Everybody in our family lives to be 100 now. So there's this expectation that everything could be treated that everybody lives to be very old. And so in some ways, I think it's harder to get people to recognize that sometimes we can't alter the course of disease and the patient will die. And so I think we have to be very patient. We have to realize that when patients and families air responding, when they're making decisions, the emotions we're hearing, it's because they haven't been down this road before. Um, just about a week ago, I was in the home of a patient who is in his nineties, and, uh, he's just a man who had multiple medical problems. Um, but he now is in a circumstance where he has developed a severe G. I problem that is not operable. And so he will die, you know, from, uh from his disease, you know, likely in the weeks ahead. But as I sat there and tried to help him and his wife understand what was happening, you know, when I began to talk about an option of just staying at home of not returning to the hospital. Which, of course, in my view, I'm a nurse, right in my value. I'm thinking, Oh, it would be so much better to stay here in the comfort of your home rather than more trips, you know, in an ambulance to an e r and how miserable that is, right? But as I said that I had to take a deep breath and think This is a man in his nineties and his entire experience of healthcare is when something goes wrong, you go to the hospital, right? That's that's what you do. And so the thought of not going to the hospital, the thought about staying at home, the thought that he might have a problem that couldn't be fixed was he had never even thought of that before. And so, you know, in having these conversations and and just thinking about advance care planning, it's really important that we always put ourself, you know, into, you know, the place of the patient or family and try to really think about what this must be like for them to be asked these questions, or or thio even feel that you have to make these decisions. It's a very, very unnatural thing. So it's It's hard, it won't go well all the time. And we will always have those patients who, um this. It's just such a challenge. But, you know, even in the most complex of situations, I think really trying to communicate well, trying to listen, always remembering who is this person. But is there life experience that might lead them to a different decision that I might I have thes air, very important things. As we we all try. We all want the same thing, which is the best, most respectful care for patients and families. Thank you so much. It looks like we have a couple of questions that popped in while you are talking. Dr. Farrell, the first question here is what is the best response when the provider says they're not ready to have that discussion? Uh, you know, I think we see this all the time. Like, for example, it's very common that an oncology nurses seeing a patient who is declining. Um, the oncologist, uh, is very focused on the tumor. Or, you know, the oncologist is saying, Well, you know, we have this clinical trial that I'm really hoping gets started next week, and this patient would be perfect for it. And so no, I don't. It's not time. I'm not ready. Um, I think, you know, we're frustrated as nurses and his clinicians that we want Thio. Really? We know that's probably not in the best interest of the patient, but I think I would also say there are times where we have to practice the same ideas about having patients with our colleagues as we do having patients with our patients. Right, Um, that, you know, this this medical oncologist, maybe was the person who diagnose this patient years ago, And he or she has seen this patient, um, you know, get very sick, but then respond to treatment. And, you know, it has has come to know this patient on pull them through, you know, many phases of the illness, and so often the clinician isn't ready. Um, but I think you know, we just want toe again in a respectful way. Um, continue communicating with the oncologist, you know, to say, um you know, I know you're really close with your with her. You know, Mrs Smith has told me how much she how she's so appreciates all that you've done for her. Um and I know she's, you know, to try toe, make it be a and conversation. Not but conversation like either, you know, you win, and we don't talk about advance care planning it all, or or, you know, I win, and and we're sort of at odds, but rather, you know, I know you're really excited about the potential of her going on this trial or that perhaps she will get better. Um, and I'm also really concerned about, you know, her stress and her family. You know, I I think it would really help if we could have a family meeting. Or I think it would be really helpful if we could, You know, we're not ready. Thio get proud of care involved. Can we get social work involved or, um, you know, could we could I go in with you, You know, to You know, when you go to see the patient, the next time because, you know, keep it focused on the patient would be my advice that, um in most conflicts with our professional colleagues. It's when it becomes me against you. It generally doesn't go well. And the more that we can keep the conversation about the patient. What is the patient telling us? What do you know about the patient? What do we both hoped for? For this patient is the best approach and again doesn't always go well. But we continue toe persist to be the voice for the patient. Advocate for them. Get our interdisciplinary colleagues involved in the care. I think those are the best strategies. Thank you so much. Well, looks like we have we don't have enough time for There's one more question. Let's see her. Um, it says, based on my experience upon diagnosis, the palliative care team was already involved in breaking bad news. The palliative care team are present and so advanced care planning or carried out at the earliest time. Is that your practice? Just wondering, right? You know, we all know that getting proud of care involved is most all the time is gonna be the best strategy because the power of your team, they're experts at communication. They're experts and family conferencing. They are an interdisciplinary team. And so the sooner we can get out of here involved, it's like absolutely, Um and and unfortunately, you know, the clinicians aren't always ready to get care involved. But any time we can get out of here involved and get them involved early, it it's so much more likely that advance care planning, you know, will happen. I think you know, for example, sometimes we just say, you know, I understand that you're really, you know, very focused on beating this disease and trying this new chemotherapy s Oh, you know, I think it would be good for for our palliative care team to get to know you that could really help with your pain. So, you know, sometimes we introduce the health care team focused on, like, a physical problem. But what we hope happens is that that's sort of the entree. So you know those nice people that came in and helped with my pain or my destiny or my nausea? Um, well, now I have a relationship with them, and so it makes it easier when palliative care needs to get more involved with end of life decisions. Or we might say, You know, you've you've been diagnosed with pancreatic cancer and we know that you're you come here because you really want to try this treatment. We'd like you to also see the power of care team early on because they're going to really help with symptoms on Ben. You know, it might just be a one time visit. Maybe politics is just going to see them once. But then when we really need to, we're at that fork in the road than palliative care already knows. This patient is already met their family. And so they will be much more able to help with decision making an end of life care. But pound of care involvement is always a good thing. Thank you so much, Dr Farrell. And thank you again for coming today and speaking with us about this. Such an important topic here. Thank you. Thank you all.
