 All right, well, welcome everybody. This is Donna Crosser, Chief Clinical Officer at the Pages of Safety Movement Foundation. We're here to bring you another COVID-19 update. Today we're gonna be talking about preparing for and managing end of life decisions. Kayleigh, can you advance the slide for me? And so before we get started, I thought that I would take the opportunity to just kind of level set everybody on what it is that we're gonna be talking about today and what we mean when we talk about those end of life care conversations. So you're gonna be hearing about, what we call advanced directives. Many of you know what that is. If not, what that means is planning in advance for the eventuality of your own death. So that means creating a living will or a power of attorney. And I'm sure that as we go through the conversation, you're gonna hear a lot more about what that means. Do not resuscitate or DNR is something that happens at the very end of life when we decide that we don't want any more heroic actions to keep us alive. And so a family or a patient may identify that they do not wanna be resuscitated. And then palliative care and hospice care are two different areas that are growing in healthcare. We are joined today by Dr. Seth Kravak who is also going to be talking a little bit more about palliative and hospice care. But hospice care is what happens more towards the end of life when we know that somebody is in a terminal illness. Palliative care is care prior to that point. Something that we really wanna encourage people to utilize a lot more. So just to level set on what it is that we're gonna be talking about today, I wanted to review those terms. We are really excited today to be joined by Vanda Vaidn-Bates. Vanda is the CEO of Tenth Dot which is a coaching and consulting firm. She is also a passionate patient advocate and is on the board here at the Patient Safety Movement Foundation. Vanda is going to be moderating our session today. Welcome Vanda. Thank you, Donna. I'm really, really happy to be here and also to be among friends on the panel and with all of you who have decided to attend live today or might be listening later. We have quite a lot of both content but also today we wanted to make sure and Donna has given me very firm direction to make this an interactive conversation among the panelists. And today you'll also have an opportunity and we certainly hope that you'll engage in the chat line as well as the Q&A. Let me tell you just a little bit about the distinction between those two. On the chat line, you should be able to engage other people individually or as a group and Kaylee, our back house tech master today will be monitoring that and feeding information to both Donna and myself and we'll be paying close attention to that in your dialogue so that we can incorporate that into this webinar. On the Q&A side, about 30 minutes before we close this webinar, we'll open it up for a conversation within the panelists and we'll use your questions and we'll give some answers but we'll also just invite more conversation with panelists about the questions that you pose. We hope that and Kaylee, if you'll make sure that the slide is up that has the instructions for bringing up Mentimeter, we will be doing polling throughout this webinar and we hope that you will be sure to respond to those questions as they pop up and in fact, in just a minute, we will have one. But let me first just introduce the guests that we have present with us today, the panelists. Chaplain Kari Buckner is the Director of Spiritual Care Services at Kaiser Permanente, Greater Southern Alameda area that's just outside of Oakland. She was inspired from a young age to support people in their times of great need and as you hear her today, I know you won't be able to miss her passion for supporting people where they are during life and death matters. Marty Moore is a healthcare expert, a CNO, Strategic Transformer, an author, an innovator and if that's not enough, she's also an inventor. Marty, someday you have to tell me what you've invented. You may have seen Marty's blogs on LinkedIn and she's a passionate advocate for bringing mindful approach to the delivery of medicine. She recently helped navigate her challenges, many challenges with her mother during her final days of life and she's going to share with us a little bit about her experience doing that. Bernadette Wilson completed an MBA at the School of Business and Economics at Sonoma State University and she's the CEO of Cognitive Performance as well as the co-founder of BrainFit Institute and she's an executive training and mindfulness coach. She's going to speak with us as she does with her clients about finding more peace and acceptance in the face of great loss. Janet Paste is a newly retired and highly respected veteran broadcast journalist who has shaped New York City's broadcast news and other television outlets for decades. She now volunteers with teenagers at St. Francis Xavier Church in Greenwich Village. Janet recently completed her advanced care directive and will tell us about her experience doing so. Michael Cobina brings years of experience as and he's a chaplain. He brings years of experience as a hospital chaplain to his current position as administrative services manager and he directs volunteer services and spiritual care at Kaiser Permanente at Santa Rosa Medical Center. He is a faculty member for the Santa Rosa Medical Center residency program and he co-chairs the spiritual care leaders peer group with Chaplain Kerry Buckner, who I introduced earlier. Dr. Janneke Mellon Olsen is the consultant anesthesiologist at Barham Hospital in Oslo, Norway. And she's known for her passionate commitment to patient safety. She's also a board member of the Patient Safety Movement Foundation. She holds several honorary positions globally on behalf of patient safety. And finally, Dr. Seth Kravett, board certified internist and palliative care physician. 12 years ago, he decided to become a physician executive leveraging his clinical experience to improve the delivery of care and organizational performance. He's the senior medical director and assistant vice president for MedStar Health National Center for Human Factors in Healthcare. And thank you to all of the panelists for taking your time to be here today. We're really looking forward to hearing your comments. So with that, Kaylee, let's start with our first polling question. And you should be able to see on the screen our results. So, and I'm going to take the poll myself. I've got it set up here to do so. And we'll just give this a few minutes or not a few minutes, but we'll give it a couple of minutes while people respond to this question. Be sure that when you choose your answer, you also choose the submit button at the bottom. It's sort of a two-step process. So you'll click your option and then push submit and we should start to see the polling results come up. And so far, the question is, what is your comfort level in discussing advanced directives and planning for end-of-life care? We have four people who are very comfortable and one person who's somewhat comfortable. And I'm going to guess that we have a number of people who are still getting Mentimeter up. So I would invite you and encourage you to do that as we move to our first panelists today. Chaplain Spachner and Covenet, thank you so much for being here. And we wanted you to begin this webinar because we know that you are with patients and family members and clinicians, as well as administrative staff in your field of practice. And so you have a really unique perspective, we think, in hearing from many different walks of life, many different cultures, many different ways of looking at end-of-life care. And as a widow and someone who came upon what I would call just sort of a shocking death, I have to admit that my late husband and I, we had no plan of care in place. And so this topic is of great importance to me because I would advise people to give it a little thought before it happens. And so I would ask you Chaplain Spachner to please, if you would speak first, to the questions that we posed before. And it's really just about, what do you notice about what's difficult for patients and families as well as clinicians? What concerns do you hear about? What reservations are present for people when they're thinking about end-of-life care? Well, thank you, Vonda, and thank you, everyone. I commend you for bringing this topic forward because as you named, it can be very painful to have these conversations with someone that we love and that we care about. I guess what I see around what we call sort of goals of care conversations, first of all, I just wanna say, as you mentioned, it's certainly best to try to have these conversations with the people that we love before they're in a type of critical state, have some critical illness or injury, whether it's a long-term diagnosis or an accident, God forbid. So I really wanna say and encourage people to lean into these painful and crucial conversations when possible because though it does bring up many times, these experiences of what we call anticipatory grief, it can certainly, having these conversations can lessen the complication of our bereavement after because it's very painful to see families in the ICU, perhaps the person they love most in the world is on a ventilator because they didn't know what this person would want at the end of their life and then the family's in a difficult situation of having to withdraw care. And so I guess for me, it's just essential to be able to have these conversations and once they get started, really speaking from the heart, when we can say to people, what's important to you, what's a game changer for you? And of course, it's very different if you have someone who has, my mother had a cancer diagnosis and so we were able to have these conversations because we had time. It doesn't mean that her death was what she wanted. She didn't die to date the way that she wanted, but we were still able to at least have that conversation when there's a sudden or tragic, a brain aneurysm or stroke or something like that, an accident, obviously these conversations, many times they can't happen. So yeah, I think whatever we can do to acknowledge, just acknowledge that these conversations are hard but they're really crucial. Thank you. It's clear you speak from both experience but also from a personal matter. And I appreciate you kind of really putting attention to that it's maybe difficult, but it's also really, really helpful. And one takeaway is that thought that the first question you ask is what's your prior experience because that has such an informative impact for how we might see the current moment or the future. Thank you. Chaplain Kobina, would you please speak to the same questions? What do you find in your experience as a Chaplain in spiritual care? Yeah, I just want to thank Kerry for standing there so often. Thank you all for this opportunity to have these conversations and certainly we all know that it's not easy and also I think our cultural context doesn't support these conversations and so we have to be intentional about that. For me, one of the things that I get to see both the perspective of the clinicians and as well as that of the patients and the families. For, I'll start with the clinicians. What is been clear to me for this time that I've been with clinicians is that it's sometimes just discomfort of having those conversations. So people are not, it's not what they are trained to do and so they find difficult in most cases to have those conversations. Obviously people in palliative care or who have had specific training in end-of-life care is different but by and large the discomfort of having those conversations and also the sense of not clear agent, that you don't have a clear agent that advocates for you and so when people in the hospital and they don't have advance directive that is clear, sometimes the advance directive is not even clear. So it's important not just to have the advance directive but to make it clear because there might be a couple of agents involved and individuals involved to support, to make those decisions and sometimes they are not in agreement and so that becomes a burden for the clinicians to find out how to ensure that they offer the care that the patient really needs. One of the examples that I can remember is, a patient that was dying and everybody knew she was in pain, she had soles and the staff thought they were torturing the patient but the advance directive indicate the agents they wanted everything to be done. So that was the staff were in moral distress and in my role that is part of the things we do together with the ethics committee to have those conversations to kind of try to hold in balance what their moral responsibility is of taking care of the patient and what the agent or the patient wants that in most cases are not in agreement. And I was, you know, another thing that comes up is family support to be able to have consistently family to be around, to offer support especially in this COVID moment that most hospitals have limited visitors it's become very crucial to have a family member and advocate to be able to support patients in those situations. I was talking to a group of physicians yesterday, the training that I was and one of them indicated that being able to write an order for a family member to visit for them is their intervention of trying to take care of the patient that is dying. Another struggles that comes up is also cultural and religious beliefs and how to reconcile that. Sometimes some religious beliefs or cultural perspectives does not align with, let me say, the Western approach of things. And so there's that difficulty to see through what is important and what the patient wants. And for instance, there are some cultures that the decision is made collectively but if the physician wanted to talk to somebody and they are not the agent, they find it difficult to have that conversation because they think they need to have the conversation with the agent. There have been situations where the patient would defer to the elder or the matric or the patriarch in the family to make those decisions on their behalf. There are some cultures to that they don't want the patients to know that you're dying. And so how do you balance that? So I think I will kind of end here and pick up as we go along. Thank you. Thank you. Yes, thank you. Thank you both Chaplin and Chaplin Buckner and Chaplin Cobainette. I really take to heart the words of how difficult this is but because you're in it every day, I would imagine you can bring quite a lot of comfort. I also just wanna recognize that we're not always in that advantage of having somebody who's a professional nearby at those times of needs, those times of need and that preparing ahead is I think sometimes more than just filling out and thinking about decisions around the end of life care but it's also just preparing to be able to speak about it and getting more comfortable, which is the primary objective for this webinar today. Our hope is that those who are here listening now or listening later will become more comfortable speaking with your family members, with your clinicians, with your care providers. So let's go to another polling question and Kaylee, if you would bring up the first question as we're very interested in finding out and Kaylee advanced to the next polling question, please note one more, there you go, thank you. Have you spoken with your medical team about end of life care? This is a yes or no question. Have you spoken with your care team about end of life care and do make sure that you push the submit button so that we see the full response about half and half so far? We'll give it just another 30 seconds here and then we'll go on to a second question. That's about what I expected or anticipated is more people have not than have. Let's go to the next question, Kaylee. And this question is about your loved ones. Have you spoken with your loved ones about end of life care? Again, a yes or no question. And this is not necessarily that you've got it in writing but that you are speaking about it. And so far more people have spoken with their loved ones than a care provider, which I think is probably what I would have anticipated. I don't know if that's true for the rest of you. Thank you for taking that poll. We appreciate the information and we'll be circling back to these questions when we go into our Q&A or conversation toward the end of this webinar. So I'd like to turn to you, Bernadette, next. And Kaylee, if you could bring Bernadette up. Bernadette, and I think you'll need to take her off of mute. I'll make sure I can see you before we begin, Bernadette. Right. There we go. Now we see you. Hi. Bernadette, you have had both personal loss and I don't know if that is what brought you to work so closely with your clients and become such a compassionate listener for people who are experiencing loss. We would really like to hear from you about what have you learned over the years in having these discussions and being an advocate for these discussions that you think might be helpful for listeners today to hear. Thank you, Vonda. It's quite the honor to be participating in the panel today. And again, for having the opportunity to answer this thoughtful question. First, I'd like to say I'm thankful that I'm following Kerry and also Michael with that they brought forth some of the things that I'm going to be talking about. One is that difficulty of having that conversation and that there are some cultural and a lot of differences that really affect how we approach the subject. So throughout my career and working with individuals and my clients and also in my own personal loss of losing my son, I have found there's one initial step. It may sound easy when we speak of it but it's often very, very difficult to do and that is to understand that loss is a part of life. We just can't get away from it. It is a universal condition. Each one of us has some type of loss every single day and it could be a simple loss as losing a material possession to a more complex loss such as losing our physical well-being, our mental cognition and then of course what we're talking about today is the end of life, of that of our self if we have a terminal illness or that of a loved one. So given that this is very difficult to talk about I also wanna bring in the process that we go through which is grief. And I know Michael mentioned and I heard grief spoken quickly. I think that was made by Kerry that grief is an emotional reaction to the loss that we go through. And just as loss is universal, grief is very, very personal. How we process our grief is very, very individual and it's affected by many different factors such as our cultural background, our family of origin, our personal values, the conditions and then how deeply we love the person that we may be losing. There may be distant relatives that may have not seen a loved one for quite some time and their reactions can be quite different if you're always the caretaker by the bedside. So these issues are really, to take as an individual to look that your grief is your own personal experience. So given that we also can think about grief in the sense of losing our hopes and futures and dreams that we may have had with the individual even for our own lives. So grief really is not a disease or a sign of weakness. It's really an emotional and spiritual and physical necessity that we go through. I was asked to just give you a little bit of perhaps some tools today that would help you with this process and facilitate these conversations. As a mindfulness trainer and coach, what I really work with my clients and it's based in neuroscience practices is to use, I have a multiple of techniques, but if you bear with me, I know we have short on time, but I'd like to just take you through a real quick meditation. Regardless of your background, as we know, prayer is a form of meditation. I work with some people that are extremely religious and we use prayer as their mention. So if you'd like a more contemporary form of meditation, this is one that regardless of your background that you can do. And what I call this is dual listening and it's very, very, very simple. And if you would just for a moment now, just breathe in and relax and then listen to the sounds out of your right ear. Just note the sounds and if you have any intrusive thoughts, just come back to that listening. If we had more time, I'd have you then go to your left ear and do the same process. If you notice, you probably become calmer immediately because our brain can only do one thing at a time. So if we are concentrating on listening and being right in the present moment, it reduces our stress and anxiety level. This process you can do regardless if you are at the bedside of someone that you care for or having that very, very difficult conversation we're talking about here and how you're going to approach it. And just remember also to take some time away and if you're emotional levels, I always say from a scale of one to a hundred, if you're getting over a 40, just step back and remove yourself from the situation and then re-enter the situation. So these tough conversations can happen. If we practice some form of meditation or some type of skill such as this, it really, really can help us make the conversation. And so finally, what I'd like to say is really just give yourself permission to feel how you feel where you are. Take time to reflect and understand that your loss is very, very unique and excuse me, your grieving process is very, very unique. And just find a way to tell your story and just have people continue to listen and find a meditation practice that really works with you. Bernadette, those are very wise words and I want to pull out one word in particular that I heard you use, which I know to be true for me and I know for others as well. And that is practice. That if we practice, then when the moment comes and that's for me anyway, and I think you made this point clearly, it's different than worrying about it. And I love that exercise and I'll repeat that next time I'm in the moment where I'm distracted. Just choose one ear and then the other. Thank you for the mindfulness practice and as well as bringing in your personal experience of grief for us to be able to be present with that. Thank you. Thank you. Janet Paced, I would like to turn to you next if we could please. And Janet, you have recently actually taken time to create an advanced care directive. And Kaylee, if you could switch us over or bring Janet's mic up, I think it might actually, it might automatically rather switch her over and I'll pause until we see Janet. I think you should be able to hear me. I think I am moving. There we go. Now we're there. Thank you, nice to see you. So, what has been important and how has the process gone for you to create an advanced care directive? What concerns did you have going into it? You know, I, you hear people say, and as I've gotten older, my brother, for example, will say, I just don't want any heroic efforts. You know, that's like nebulous vague, you know, whatever that means. And I, in preparing for my retirement last year, the last chapter of the book that I read was titled, I think, The Talk. And I was like, okay, you know, now that you've got all the nuts and bolts of your financial plan, what you're gonna do with your retirement is a good time to have The Talk. So I thought, well, yeah, that makes sense. So I talked to my doctor and said, you know, I think I would like to know a little bit more information about being together an advanced directive. And I talked to my best friend who lives here, one of my best friends who lives here in New Jersey, actually, I live in a French village in New York City. But, and she's not the most comfortable with death, to be honest. And she was like, well, very hesitant. So the doctor says something to me that really has stuck with me and I think is very much the theme of this, which is that you're really honoring your healthcare proxy by trusting them with the information and to honor your wishes. So I said that to my friend. I said, look, you are not deciding to unplug me. You are only, although, of course, death like life is very messy, but you are here to represent my wishes. That's what you're doing. You're not making up your own wishes. You're not deciding, we're gonna starve. They, my friend, she calls me Jeannie. We're gonna starve Jeannie and I love food, you know, or, you know, we don't wanna unplug. I don't wanna decide whether to unplug. It's like, no, that isn't what the process is like. So when COVID hit, I sort of liken it to bread baking, to be honest. It's like, I jumped onto the bread baking bandwagon at about the same time that I decided, well, I probably, you know, if a pandemic isn't a good time to stop procrastinating, I don't know what is. And of course, everybody was working on Advanced Directive. So it was really there. It was out there. The information was out there. And, you know, it's kind of a, there's the logistics of who's gonna do it, who's filling in the form. Getting the forms are very easy to find online. I didn't have any trouble with that. And then the other part of it, which is you're talking about your death. You're talking about your final moments. And yeah, it's easy. I found myself as a producer, left with Kanda, who's my friend, and has been involved with being very closely in this process. You know, it's like, as a producer, it's like I get to fill in the form and what are my wishes and what am I gonna do? And the, oh, holy shit. I mean, you know, like, these are my final moments. How am I feeling about that? How do I respect the people that say that they wanna be my healthcare proxies? In the dialogue with my family, who I thought I was not going to burden my nephew, who's the only child of the younger generation in my direct family with these decisions. I was shocked to find out, and surprised to find out, because I talked to him and my brother. And he was like, well, no, of course I wanna be involved in this, you know, your family. And then I made what I thought was probably one of the best decisions that in the process, which was I did research, figure out what do all these things mean? Like terminal, you know, what are these states of terminal, let's see, what do they say, you know, a terminal condition? Well, what if I'm diagnosed with a terminal condition, but I'm gonna live for another couple of years? Is this thing gonna kick in before I want it to? The nice thing about the advanced directives, you can change your mind if you want. But I talked to my doctor and a pretty amazing woman. She's my primary care physician. She works in a clinic, not far from me, just because it was close to me. And she was in my network. I happened to have gotten myself, you know, get provided a service by this clinic, which is fabulous because they do everything. But her clinic got very involved. They treat gay and lesbian, it's the Gay and Lesbian Health Center. And I'm neither gay nor lesbian, doesn't matter if I were, but the geography connected me to her. But they really were dealing in COVID with the population, the trans population, not getting the kind of service they should get. She was dealing with that. The city put homeless people who were struck with the virus into abandoned hotels. So she was managing one of those facilities. I mean, really doing God's work. So she gave me an hour, actually called me and we talked through everything. Not the least of which was the assurance that she said, look, I wouldn't be your attending, but make no mistake about it, I am part of your team. And we talked through, you know, like, what does it mean, terminal condition, permanently unconscious condition? Minimally conscious condition in which I'm permanently unable to make comment. And, you know, like, I knew that I had, I checked the box, I did not want to prolong my life, but I wanted to make sure I understood what those conditions were. I think those are really an important part of this. And the medical professional, I, you know, my doctor was able to give me that time. If you have that opportunity, take it, advocate for it, frankly, if you have a, you know, medical care worth its salt, which regrettably many of us don't insist on it. And then, you know, I don't want cardiac resuscitation. I do not want mechanical respiration. I do not want artificial nutrition and hydration. I do not want antibiotics. Those were four boxes for me to check. I didn't fully understand that. I'm like, okay, why, I understood mechanical respiration. I had a friend who I lost in COVID. And he had underlying conditions and he died after weeks of being on a respirator. So I kind of knew pretty much that was not something I wanted, but the nutrition and hydration thing, like anecdotally, I thought it meant that, well, you know, they're gonna starve me to death. I'm thirsty. I don't get why, well, it's not what it is. And I, you know, I, even some of my healthcare proxy candidates were thought that, well, you know, if you're going into surgery and they give you, you know, put some nutrition in your IV, isn't that artificial nutrition? You know, it's like being very clear about what this is. And I asked, I said, so what if I'm, you know, in critical condition and a respirator would tide me over and it would be a good choice. I said, I don't wanna say to someone trying to save my life, don't do that if that might save my life. Like how do I know that the doctor's really gonna know? And she walked me through the process. Like when they put you on a respirator, they continue to try to wean you off the respirator so that when it is clear that you have no chance of survival, that it is irreversible, that your condition is irreversible. That's when this kicks in. And I found that process to be comforting. I was able to get past so logistics because I have a couple of stumbles with my healthcare proxy, the friend who didn't really wanna do it. My doctor said, you know, proxy doesn't have to be local. I picked her cause she was local. And she wasn't really the one I wanted to do it. I wanted a friend who had gotten me through rehab from a hip replacement cause I knew she knew what she was doing. And I knew that she was comfortable with this topic. And so I, you know, that process of like really talking to these people about really what their comfort level is, will they be able to represent? Thank you. Yeah. I don't wanna interrupt you and make sure that we, I know that there's a lot more than you could say in my time. Well, you're not on that end very often. So I get to do that role for this moment. One thing I really wanna point out two things and Donna, if you would make sure to make a point to speak about this when we get to the conversation in a little bit, there will be resources and links given to people who want to learn more and to do the kind of research that you've done Janet. Everyone should be so lucky to have a physician who's willing to take an hour, especially during a time of, you know, great surge in need elsewhere. The other thing that I wanna point to is that some of these decisions do go state by state. So not only are you doing global or general research on definitions, but you're also doing research on your state's policies and protocols for that area. So Janet, thank you for taking the time. Kayleigh, let's go to the next polling question. And this one is an open-ended question. So type away. I don't know that you'll be too limited in what you will be able to. And there we go. Why do you or don't you want to have an end-of-life care plan in place? And that end-of-life care plan could be a number of things. It doesn't necessarily only have to include an advanced care directive as Janet just spoke about. And if you would just take some time to type in, and I'm not sure we'll see the answers on this, but I do wanna give it a good thorough couple of minutes here to give people time to type in. Oh, we do get to see the answers, that's great. Just haven't gotten to it for myself. Don't know how. Feel free to just do that exercise that Bernadette gave us to focus your attention here. Just pay attention to your right ear, just to shift your attention to a more reflective state rather than a listening state if you want to. We'll give it another 30 seconds or so. Thank you for responding to that question. We'll go ahead and move on. And I wanna call on you, Marty Moore, to give us some of your thoughts. You, and I'll wait until we see you on the screen. It'll take Kayleigh just a second to cue you up and take you off mute to make sure that we hear you. Am I off mute? Yes, you are, there you are, thank you. Thanks for your patience and the transitions there. Marty, you and I had the opportunity to have some really, for me, I won't speak for you, but very meaningful conversations both before and shortly after your mother's passing just this last winter. And I know that you were very careful as a nurse. I know that there's a lot in there that you knew and you were working with people who weren't necessarily going with your program. And you could probably spend a whole day and maybe you even have developed some teaching tools around this. But if you would, just the next five or so minutes, just give us a little bit of a sense of what you think might be helpful for this group of participants to hear about your experience. Yeah, thank you. And as Bernadette was talking, they were mowing my lawn and that's all I heard in my right ear. And I was like, oh, please get over when I'm done from it. So I have spent my career passionate about assuring that we've walked with people in their journeys. And so when my mom was diagnosed with dementia, I didn't know what the journey was gonna be like. And I've written a lot of pieces about it, you know, openly apologizing that as a clinician. I thought I knew I really didn't from it. At the time it's leading up to her death. She was 75 pounds. She had no skin breakdown. So can you tell that I was a nurse and I was passionate about making sure that that she had no pressure or injuries. But I knew that our time was limited. And so on a Wednesday I brought her in and she was dehydrated. I was pretty convinced she had aspiration pneumonia. And I spoke to the nurse practitioner about getting a hospice referral. The community they lived in has a hospice house, not an inpatient in the hospital but a house. And I wanted the referral and I knew that we were rapidly going there. Because of state stipulations and also federal, nurse practitioners cannot order hospice and home health. That is a major issue that we have. And it's sad in the inbox of the covering physician. On Thursday and Friday I called back and let me share with you, I'm a chief nurse and officer at Brandy's hospitals. And I was like, listen folks, we are in a tenuous situation here. She needs to be cared for. We are doing it, but I want a referral. And they apologized many times over, said we'll bring it to his attention and we hit the weekend. So on Sunday I made the decision. I had durable power of attorney, had had the conversations with both parents. Mom knew us, but was very simplistic in her knowledge. Didn't see food as her friend, hence why we had the challenges with her weight. And we brought her into the emergency department. Now that is not where I wanted to be with my mom, by any means at all, but the system forced me and the message I really wanna get across is the system is designed for treatment and intervention. Every point, every moment, I had to fight up against it. Even though I was very clear, I carried the durable power of attorney on my phone, I had their advance directives on my phone because I can't trust that it's gonna be in the medical record, it wasn't. And as we came into the emergency department, you know, I'm loaded for bear now. And so, would you wanna care for the chief nursing officer's mother? I'm coming in there and I gave them the history. I told them exactly what I wanna see done. I wanted her hydrated, but I wanted a referral for the hospice house. The physician comes in, he says, what's the plan? Here's the plan. I want her hydrated. I want a referral for hospice. I said, observation status will go there in the morning because he wouldn't do a mission on a Sunday afternoon. Case management said, your mom doesn't qualify for observation status. Discharge him. I said, we're not doing that. We're not doing that. So we boarded. We actually boarded in the emergency department through the night. And then spent the morning meeting with the hospice intake coordinator who said she doesn't qualify because the hydration, my mom was alert and wake, she was telling stories. And I said, we're not doing that. Again, folks, it is easier to treat and intervene than to have the right conversation. He demanded a family conference. I got all my siblings on the phone. My siblings self-pay. My mom deserves hospice care. Mom was transferred over at 2 p.m. She died at 9 p.m. She had aspiration pneumonia. She qualified. And yet the system did everything it could to absolutely thwart what was her desires and our desires. And if it didn't take me fighting it, my mom would have been sent home and brought back to the emergency department. And you know the story. You absolutely know the story. So as we think about these advanced directives and we think about the conversations that we're talking about, folks, our minds are set on intervention and treatment. And people look to us for that guidance, that notation of, well, what is the right thing to do? When I stood up to the physician and said, we're not doing that. And then the hospice intake coordinator said, it would have been better if he had done a chest x-ray and demonstrated that your mom has aspiration pneumonia. And I just said, I'm not doing that to her. I'm not gonna put her through that. For what treatment? We're not gonna treat. So I want us to go deeper in these conversations to understand that if you're not in the medical field and you're relying on somebody and you're leaning into them, you have to be able to step back from what is normal for you of treatment and intervention and really do that right here moment of listening to what is in their hearts and what they are seeking out from you. Those are powerful words of wisdom, Marnie. Thank you. Thank you. And I got through with not crying, by the way. You did. I was like, oh, we'll let them not cry. Thank you. Yeah, I know that that is a situation that has history occurring across the world. And in a moment, we're going to hear from two physicians who are going to speak from the perspective of taking our good intentions and working with family to try to make that end of life care process go more smoothly. Before we do that, Kaylee, if you would draw up, we have two more polling questions before we speak with the two physicians and we'll wait to see those on the screen. First of all, this is an open-ended question as well. What makes it easier to talk about end of life care with loved ones? What makes it easier? Be sure to use your submit button when you're done. Don't worry about typos. We'll clean those up. Having time, this stuff takes time. It's not something you're going to do over a more informal time, probably. I saw it as a gift. Appreciate that. I heard that from Janet as well. I really appreciate somebody said that you have an open and trustful relationship that you're not afraid of emotions. I feel like a number of you have spoken to that. I heard Bernadette speak to it as grief isn't a disease, it's a process. It's something to actually honor. I'll give it about 30 more seconds if you want to finish up what you're typing and push submit and then we'll go to one more question. All right, Kayleigh, go ahead and switch if you would to the next question. So that's what makes it easy. What makes it challenging to talk about end of life care and loved ones? We've heard several people talk about some of those challenges, but what are yours? Some people don't want to talk about death. So true. This is interesting. Somebody says it feels like by acknowledging it it shortens the time that you have. Now I don't think I could have put that into words but I know exactly what is meant when I read those words. I think I've experienced that without even articulating it. I'm seeing a theme here about it takes more than just my own interest. It really does take everyone's interest in having that conversation and that sometimes is a first step that might be difficult to achieve. We'll give it about 20 more seconds here and then we'll move on to our next speakers. Be sure to use the submit button in order to finalize the answers. Okay, Kayleigh, if you would go ahead and end the poll and Dr. Mellon Olson, I'll turn to you next and Kayleigh will take you off mute. We'll wait to make sure that you're up and ready before I ask you a couple of questions and then Dr. Kravat, I'll turn to you after Dr. Mellon Olson. And Dr. Mellon Olson, go ahead and speak out loud just in case you're off mute. It will pop up your screen once you begin to, yes, there we go. And usually once you begin talking, the video will catch up to it. Let's see if it does that this time. Let's see what happens. There we go, I see you. Okay, good. First of all, I'd like to thank you for inviting me as a non-U.S. speaker. And that means that my cultural background is probably different from what the things are and the laws and everything are different. I would also say as I'm speaking, I am representing a European, but not European view in its own. I'm also the president of all the anesthesiologists in the world, 150 countries. And I would just like to start by saying that this is in low and middle income country a topic which is very different in how we deal with it. Yet there are some similarities. Well, even here in Europe, there are cultural differences. And I would say in my region, my country, Norway, it's quite well-regulated. It's a topic that receives much attention and there is also guidance given officially on two patients, relatives and physicians how to deal with that limitation of life prolonging procedure. But before I start more on my reflections and so on, I would like to start by thanking Marty because you spoke out so many of my own thoughts about this topic from another perspective. And that's why I would start by saying that I think that some of the problems for physicians and the healthcare system, of course, it's tailored to speed and gets as many patients through the system as soon as possible. But it's also to us because not all of us are comfortable with speaking about those things. We have not come to terms about our own deaths and our own end of life. So it might be very threatening to enter deep into those discussions. It's also more serious to decide it feels like that for many physicians to say, this is end of life. It's much easier to just carry on and carry on. It takes more courage to say, no, this is not such a good idea. So I think those that are experienced and used to doing that, I have done that, been in this intensive care setting for more than 40 years. It's important that we take the younger and teach and show by example. And also that we are not afraid of showing our own weaknesses and shortcomings in this respect, being open and trustful. But then over to life end of life decisions. My setting as I said is often intensive care unit. Now we are in the COVID and this COVID area and this webinar is set up on COVID. And first of all, we need to know are we speaking about end of life? Because sometimes you don't know whether it's end of life and then when you have to make the decision on whether to put a patient on ventilator or not, you have to consider, are you doing a patient a favor by doing that? And I know that in some countries, for instance, Italy, they have to set the age limit at 60. Well, in my setting we don't set an age limit but we have to consider the whole situation of a patient because an intensive care setting is a hard treatment. It's very hard and you have to have some resources to get through it. And of course, if you are an 80-year-old, you have less reserves in order to get through it. So it might be that you are not doing the patient a favor if you decide to put him through this. But if you think it might not be end of life, then the reflections might be different. So that's one thing. And then once you have decided to do it, it would certainly help you that you know the patient's values if they have written end of life wishes or talk to their relatives. But sometimes also you can see that when the situation is there, when payday comes in a way, their perspective might change. And I have seen that a number of times. For instance, with ALS patients, they don't want to be put on a ventilator. But then when the day comes, they change their minds. It's also important to figure out whether they wish to die or whatever if that is due to something that you can deal with. For instance, I have seen patients being tired, not having slept for a while, being in pain, and they say, I don't want to do this anymore. They might be at their full senses, but they don't know what we can do to mitigate their problems. So that's another aspect. And there are aspects. We are always working on this as a team, as clinicians with nurses and other physiotherapists and everything. It might be sometimes that the team does not agree. And then we have to have mechanisms in place for how to deal with that. And it's also sometimes that the patients and the relatives are not on the same line. And as physicians, we always have to look at what is the best interest of the patients. And I'm not sure how you do it in the United States, but for us, it's important that as we are the medical experts, we should not give the load of the real decision on the relatives. But to me, when I speak to them, I try to explain the situation. I don't give them alternatives for treatment if I'm not going to offer it to them if that's not a question. But at least that they know that we are taking the responsibility, but it's better if they are comfortable with our way of thinking. Thank you. These are just a few aspects. As you can hear, I'm very passionate about this topic. But I know that my time probably is over. So I would thank you for being given the opportunity. Certainly. Thank you very much, Dr. Mellon-Olson. And I know that there is a lot more that could be said today. And we thought 90 minutes was going to be too short. But we also know that it's very difficult, especially during COVID, to get the attention of anyone for 90 minutes. So I appreciate your brevity with something that could go on for quite much more time. Dr. Cravat, I would like for you, if you would please. And Kaylee, if you would make sure that Dr. Cravat is off of mute. To speak with us a little bit about what is it important about honoring that family member and the patient's wishes? What does it take? What helps honor those decisions when someone has taken the time to put a plan of care or plan of life care in place, end of life care in place? We'll give it a second hearing to get it catch up. And Dr. Cravat, if you speak out loud, that will trigger the video to come up, pop up as well. And I know Kaylee is working on it because she just gave him a permission that was required in order for us to see him. So we'll just wait for another few minutes or seconds here and see when we get to see Dr. Cravat. Bonda, it looks like you might be having some technical difficulties. It looks like he's trying to speak, you can't hear him. Oh darn, okay. We did a test earlier and we did hear him. So let's just see if we can't work those bugs out for a second. And if not, then we can go to open and when it does get fixed, we will turn back to you, Dr. Cravat. Can you hear me now? Yes, we can. There you are, thank you. How about now? Can you still hear me? Yes, we can still hear you. We don't see you, but we do hear you. So let's just proceed with this. And now we see you too, there we go. There you go. Sorry, we are having work in our house and they keep knocking on our internet and you may hear my dog in banging. So I apologize in advance. Fair enough, thank you. So I did take, it's been great hearing everybody else speak, it's so helpful. And Marty, you're actually the dream family member and somebody who's clear and guides us because often when people come into the hospital we don't know them. And it's our first time meeting them just because of the way that care is provided these days. So the things, I think the question was around how do we make sure that we follow people's wishes and there are a few things I've put down and one is, I've heard it mentioned before is time. So we need time one to listen to the patients. So there's a lot of listening involved because what we put on paper isn't always as clear as we think it is when we're putting it on the paper. So things change. Sometimes I'm still, a terminal condition is not, to one person is not a terminal condition to another person. So we need time and we need time to listen, actively listen to patients and families. We need time to give the patients and families, we need to give the patients and families time to work through the changes and things that are going on because as much as we prepare for these moments, often we're still not ready. And sometimes as Dr. Mellon Olson said, we have this need to move people through the system. And there are times when we just have to take a deep breath and say, no, we're not going to discharge the patient today, they changed their mind and they may not be going to hospice today. And that's really important. I think it's really important for us as clinicians to understand that this is, it can be messy and messy is uncomfortable. So I've heard a lot of people talking about it, the discomfort about talking about this. I'm comfortable and I think many most palliative care physicians are comfortable talking about end-of-life care. What gets uncomfortable is sometimes it gets personal. So I was seeing patients last week and I saw a patient who came in and said that she had metastatic pancreatic cancer and she said, I want to pass away now. So I had to work through that with her. The next day she told another physician the same thing. I came back another day, same thing. And then when I saw her on Friday, she had changed her mind. And so it's not clean, it's messy. She'd changed her mind and she was also didn't want to talk to me. And she felt like we were pushing her places. And so it's important for us as clinicians to listen and I always say to check our emotions at the door, to be, it's a challenge to be connected to somebody and to make sure they feel your presence but at the same time not take things personally. And then it's like Marty said, we work in a system that is not geared towards caring for people at the end of life. So it's constantly pivoting and being resourceful about how do we get patients and families what they want once we've defined that for the best of our ability in a system that's not necessarily geared towards it. So I'll pause it. Thank you. Yes, you know, I think it's interesting because until I heard you just speak those words, Dr. Cravat, I was I think collapsing comfort or discomfort with messy and you're helping me unpack those a little bit. You're helping me see the range in a different light. So thank you for that. I wanna go to our last polling question and then we'll open it up for comments from our panelists and I do have a couple of questions here for you but we may have a couple more and this would be a good time to add those. And again, it's open ended. Are you considering the end of life care planning differently since hearing this discussion today? And if so, how? And I will add if not, it would be a good time to say why. I'll give that a minute or two while we prepare for the next segment and the last segment of our program today. Are you considering end of life care planning differently since hearing this discussion today? We'll give it about 30 more seconds before we close this last poll. I'll just read one of them that really stands out for me. I can see that filling out the form does not end the discussion. It presents an opportunity to talk about it and life. And I think that has really been spoken from all of our panelists in different ways today. Thank you for taking the time to fill out these polls. And if we have time, which I'm not sure we will, I'll go back through the polls but I believe that they'll be posted and I know Donna will speak to that a little bit before we conclude today in terms of what to anticipate, in terms of resources especially. So Kayla, you can go ahead and close the poll if you would please. And I wanna turn to a question that was brought up which I think is particularly relevant in this time of COVID. The question is, is there a difference in age of having these conversations? Are younger people not as concerned? And Janet, I'd like to draw on you first if you would please because I know you work with youth but you also have been through this process. I'm curious if you have a response to that and then I'll open it up to the rest of the panelists to respond to that question as well. Is there a difference in age of having these conversations? Are younger people not as concerned about end of life planning? Well, I mean, I think it's a truism that younger people don't even see that as a possibility that they're actually going to die. So I think there would be a certain resistance. I think a lot of it probably has to do with your faith to whatever form your faith takes and your comfort level of having that conversation. Thank you. Yeah. If you would urge to have it. I think that that's a good point but that's true in many cases. Dr. Mellon Olsen, you work a lot in pediatrics and OB. You see a wide range of ages, I would imagine. Do you notice a difference in terms of age and perspective on speaking about end of life care? It depends on if you are healthy and have no diseases then oftentimes it's not an issue but even for children and young people with health issues. They would speak about it in my setting. But of course, the older you get, the closer you get to the inevitable. So it's more likely of course in older age but it's also changing now. I think the COVID thing, at least in my setting, it's changing. People are talking more about unexpected illness and death now. Thank you. Chaplain Kobina, what are your thoughts on this question? I'll give a quick example. Last Saturday, Saturday, we had a memorial service for my sustaining law, who was in hospice and we're talking about the health challenges that her siblings have experienced and the young people, my wife's a sister's children, where they didn't want to have anything to do with that. They said, no, don't touch it, don't go there. It's something that they think it's far away. So it's not something that they need to want to worry about but also the desire to have the loved ones closer and to have them forever. But as Dr. Olson indicated, I've also seen children here who are experiencing illness and they talk about it. They're even more comfortable talking about it. So yeah, it depends on the context. Interesting, so on the one hand, maybe more comfortable talking about death in general but maybe less inclined to speak about the plan for that in a way is partly what I'm hearing. Chaplain Buckner, I'm gonna ask you and turn to a different question but if you wanna respond to this, feel free to do so as well and then I'll ask you, Dr. Kravat, the same question. I'm really curious and I know many of us at the Patient Safety Movement Foundation have been talking about the onset of COVID-19 and how it has reshaped so much but one of the things that it has reshaped is the talk about and the conversations around death in general and our care at the time of death. And in fact, I don't know that we'd be having this conversation today if it were not for COVID-19. So Chaplain Buckner, tell us just a little bit about your experience of COVID related to this question if you would maybe give it about a minute and then I'll turn to you, Dr. Kravat. Thank you, Rhonda. Yeah, I do think COVID has surfaced so many issues in at least in our culture and our country here but I do think this, and I thought it was a really beautiful point someone made like, well, if I talk about this it's gonna make it more real. I in fact have recently written my own obituary which really upset my daughter because the idea that this is going to happen is very distressing to her that at some point I am going to die. And I guess it seems very normalizing to me now that COVID has brought this up that, and one of the panelists said it. We do have this idea that it's somehow morbid to think about this and talk about it. But in fact, we're really doing ourselves such a disservice by not talking about it. And I think COVID has raised this issue in a way that has put it in front of us that it's hard to not interface with it and see it and deal with it. And I also feel a little sort of sometimes death can get so sort of spiritualized also. And people may be suspicious or they may have certain beliefs around well, if I talk about this, am I somehow gonna like jinx myself or, and I think we have to face those things and talk about them. And I just really commend again, the courage of what has been shared on this time. So thank you. Yes, thank you. Dr. Kovat. So COVID, a few things it's done. One, I think there's a new level of sadness around it. It's such an incredibly sad situation. I didn't realize that still I started going back into the hospital with the COVID patients and there's something different about the hospital. It's heavier. Having people die without their loved ones present at the moment or leading up to it is really, really sad. And for those of us who do this work, our work is sad, but there's often, I like to say it can be really bitter, sweet, right? Because at the end of life, no matter how long that life was, there's an opportunity to celebrate what was. There's always something in the human being that was good. And then there's the sadness of loss that someone else spoke about earlier. But this created this bigger sadness. I guess it was really much harder to celebrate or to have those moments of life review or just having somebody comfort the patients in the hospital. And I think the sadness was on the clinicians and the sadness on the families. And one thing we didn't touch much on today is this concept of disparities too. That again, that this impacted vulnerable populations and people of color more than other populations in the US. And those are also the populations who historically there have been like some preliminary studies on this are less likely to engage in palliative care because I've been on a few panels with this lately about how the healthcare system has treated people of color in our country historically. So there's a mistrust here. So just this convergence of understandable mistrust of palliative care and end of life in the healthcare system combined with this influx of people from certain communities and trying to understand their needs and what works for them in this new situation really was a big burden. But I also think it's opening our eyes again to the areas where we need to focus to provide better care to all people. I think that's such an excellent point to make and that it pairs with, you know, this is a time when we are beginning to have conversations that have been buried. And this is just one of them, end of life care, but also just about those disparities and some of the inequities that we know are embedded in some of the ways in which we have put together the systems in place to care for people, whether they're a clinician or a patient or a family member or a loved one of any of those. So, you know, I think it's a very interesting point and I'd like to maybe close with that thought and get a final 20 to 30 seconds from each of our panelists, if you will, and I'll call on you by name in the same order that you spoke earlier. But what's one thing that you think we could talk about now that would help us continue to be more and more comfortable speaking about this difficult topic of end of life planning. And so I will begin with Chaplain Buckner. Thank you, Vanda. One thing in about 20, 30 seconds, please. Have the conversation, lean in and have the conversation. That's, and know that it's discomfort, you know, it's uncomfortable, it may be painful. I think there are so many wonderful resources out there and I would say, take courage to do it because what we don't have is the opportunity to do it after it's too late. Thank you. And regrets can be burdensome. Thank you. Chaplain Kobuna. I will say have the conversation and the planning and the planning involves leading up to the death and after and the rituals that are involved. So if you're having the holistic conversation, I would say leading up and afterwards. And so that the complete value of the individual is on it. Thank you. Bernadette. Well, pertaining to COVID, I have to say that this is the global situation that we are all going through. And just as beginning of my talk, when I talked about loss is universal. What we're experienced with COVID is also impacting us on very subtle levels and also more intense levels. So just to really remember that. And when we're looking at preparing for end of life, sometimes the hardest things we have to do actually reduce our fear and bring us more peace of mind. So I highly encourage everyone to take the steps and have those conversations. And if it's with your health healthcare worker or with your family member, I know for a fact, every time I go into see a physician, they ask me that question. Do I have a DNR and I will tell them, no, I am guilty of it. So again, thank you for this conversation. Very much. Thank you. Thank you, Bernadette. Janet, 20 to 30 seconds on closing thoughts. I think it is an opportunity to celebrate our lives when we really look at our deaths and what our plans are. And it's an opportunity to really listen, not be afraid to listen to yourself and to the family and your family of friends and see what you can learn from them as well as what you learn about yourself. I love the way to put it. Dr. Mellon Olson. Yes, again, thank you for having me. I think the people who are speaking here and also listening, you are not the average population. So you are those who are not afraid to enter into the topic. And I think that all of us should take the risk of exposing ourselves, show our own vulnerability, trying to spread the news to everybody we know. And don't forget if you feel insecure, there are people out there, there is literature and so on. So we can all support each other in spreading this gospel because it's so important. Thank you. Thank you. And Dr. Kervat, you get the final panelist word and then I'll turn it over to you, Donna. I probably tell my kids also take a deep breath, acknowledge the discomfort and realize that once you have the discussion, you're not going to be worse off. It may be a little uncomfortable, but in the end you end up with something better. And that these are ongoing discussions and it's not clean. So it's what I said before. I don't know if you can see it's determining. I think I heard Janet saying it, you know, it's not, it's not black or white. And we'd like to say it's DNR, not DNR, but that's not what it is. It's so much more complex than that. And it has to be worked out over time, but it's very doable. Thank you. And Marty, I'm so sorry I skipped right over you. Would you please give us your final thoughts? No problem. I think I just want to say that if you're in healthcare leadership, you start to step back about the bias. And when I say that is, many times end of life is seen as a department and there's certain people that do it. And that we've got to get that out of the system. We've got to look at it and think about it in that, that conversation should be held by all of us who have moments of contact with humanity. And that's where we have got to broaden it out and change. Thank you. This has been an enlightening 90 minutes for me. Donna, I know you have a few instructions on resources before we close in this final minute. Yes. Thank you all so very much. This has been a fabulous conversation, a much needed conversation. And, you know, you said that we are in the minority. That is absolutely true. So I hope that this can begin a conversation that we can all have with our loved ones and our friends to get the word out there about this. So there are some resources that, that I know you have spoken about on, on this panel. If there are any in particular that any of you would like to share with the audience, then please email them to us and we will make sure that those are on the email blast that goes out with the recording of this webinar, as well as on our COVID resources page. Okay. Well, we are right at time. It has been a fabulous 90 minutes. Thank you so much, Fonda. You have been an amazing moderator and thank you to everyone on our panel for joining us today. This has been fabulous. Thank you and thanks to all who are listening and listening later. Have a good day, everybody.