 Well, we are right at nine o'clock, so we're gonna go ahead and get started. Good morning, everybody, and welcome to our monthly webinar series here at the Patient Safety Movement Foundation. Today we're talking about palliative care and the impact of palliative care on patient safety. I am Donna Proster, I'm the Chief Clinical Officer here at the Patient Safety Movement Foundation. So we're gonna go ahead and get going here. We have a lot of content today. We're gonna talk about what the difference is between palliative care and hospice care and how palliative care can really involve patients and families more in their care process. And also just talk about how that impacts patient safety and what organizations can do to facilitate those conversations a little bit better. As always, we are offering CE credit to nurses, pharmacists, and physicians for this session. The CE is only available for the live webinar, so if you are viewing this on our YouTube channel, unfortunately, we will not be able to provide CE for that. MedStar Health is our CE provider for these groups. So if you are a nurse, pharmacist, or physician, and you have signed up and indicated that you are one of those professions, you will receive an email from MedStar within the next five to seven days, giving you information about how you can retrieve your credit. We are also really excited to announce that respiratory therapists can also apply to MedStar to receive AMA credit that generally speaking will, it's depending on the state may count for respiratory therapy credit. We are also, for the first time, offering a CE credit for this event. If you would like to get a CE qualified education credit for this, then you can go ahead and log this event into your ACHE account. And we are offering certified professionals in patient safety credit through the Institute for Healthcare Improvement. And if you have indicated that you would like that credit, then you'll receive a certification from the Patient Safety Movement Foundation. Again, it may take five to seven days for us to process all of this. And so you can see on this slide, none of our panelists and none of the planning committee has any financial disclosures to report for this event. So with that, I would love to introduce our panelists. I'm very excited to be joined today by Nicole Frost, Shelley Hogg, and Sherri Lowe. I'm gonna have them each introduce themselves just a bit. So Nicole, tell us a little bit about yourself and your background. Hi, my name's Nicole Frost. I'm an advanced practice nurse. I am currently in Morehead City, North Carolina, working at a 135-bed hospital. And the inpatient palliative consult team. Excellent, thanks Nicole. Shelley. Hi there, I'm Shelley Hogg. I am a neonatologist and pediatric palliative care physician. And currently working in rural Oregon and focusing my practice mostly on perinatal palliative care and neonatology. Wonderful, welcome. And Sherri. Hi, I'm Sherri Lowe. I am a registered nurse by trade, currently working in the industry for a sponsor. But I come today from the patient and family aspect in telling you my story about my experiences with palliative care. Wonderful, well, welcome to all of you. We're so excited that you're here. We have a lot of content. As always, please enter your questions and into the Q&A and we will get to them as we go or we will address them at the end. And if you have any comments, please feel free to enter those into the chat function. So let's go ahead and get started. And Nicole, why don't you go ahead and kick us off? Okay, now I will. So a question that I'm asked on a routine basis is what is palliative care? The majority of my referrals do not know what palliative care is and assume that it is hospice. Therefore, I'm often met with mixed emotions, confusion, shock, anger, or sometimes relief. While palliative care is not a new term, its transition into practice has been modest as the culture of care has routinely been a focus on curative treatment until death is imminent. And only then is a shift in goals toward comfort initiated. The World Health Organization stated that 40 million people worldwide could benefit from palliative services. However, only 14% receive it, even with the positive correlations identified with early palliative interventions, reductions in hospitalizations, decreased cost to patients in the organization, and increased quality of life for the patient and the family. The differences and similarities between hospice and palliative care are confusing to most. Both hospice and palliative care offer comprehensive holistic care to not only the patient, but to the family or support unit. They both focus on alleviating symptoms to those with chronic illness to promote quality of life. While both palliative and hospice closely align, they do have differences. Palliative care as defined by Coyle is comprehensive care that impacts the psychological and physiological outcomes of patients in all stages of the disease trajectory, meaning that palliative care can be utilized alongside of curative measures. Hospice, while closely aligned with palliative care, focuses on comfort without curative measures and typically carries a six months or less life trajectory in adults. One way that I like to look at palliative care is that it's based on need and not a diagnosis. That being said, all hospice is palliative, but not all palliative is hospice. Next slide please. So when should each conversation be initiated? Palliative care is a large umbrella that works with other providers as another layer of support to assist with symptom management, to increase quality of life, assist with advanced care planning, goals of care conversations, psychosocial and spiritual support, and provide guidance with transitions. Palliative care is many things. We are providers, we are counselors, we are interpreters, we are cheerleaders. Sometimes we're referees and sometimes we are family and we cry. This diagram depicts a trajectory of palliative and hospice and recommendations of when conversations should be initiated. At the beginning is when screenings for illness take place and you can see that in that light green triangle at the beginning. At the point where the light green triangle and the curative care and palliative care and diagnosis intersect is when goals of care conversations and advanced directive should be initiated because palliative care is reserved for anyone living with a severe illness. It can be used as an intervention at any stage and is recommended as early as possible, sometimes at the point of diagnosis. Palliative care does not depend on prognosis. Examples of serious illnesses that may warrant palliative care include but are not limited to congestive heart failure, COPD, cancer, dementia and Parkinson's disease. You can see in the beginning of the course of illness, the focus is largely on curative care with increasing focus on palliative care as the disease progresses. At approximately the point in between where active disease directed treatment and minimal disease directed treatment, that's when prognostication is performed as well as meeting the psychosocial, physical and spiritual needs of the patient. At the point of minimal disease directed treatment, hospice conversations should be initiated and COD status reiterated. Discharge planning is important at this point as well in the course of illness as it continues with psychosocial support and symptom management throughout. At the point of no disease directed treatment is when end of life care is initiated. This is where hospice steps in. Again, hospice is provided with patients with a diagnosis of less than six months and not seeking curative treatment. The focus is solely on comfort to enhance the quality of life they have left. Quality of life may look very different from one person to another and is very individualized. It is important to note however, that many patients still receive palliative care when at end of life and never transition to hospice depending on when palliative care is initiated during the course of illness. Next slide. So I'm going to muddy the waters a little bit and talk about pediatric palliative care and how it's a little bit different from adult palliative care. So the similarities was where we'll start. So it's still holistic care, holistic care of the child with complex and or life limiting illness and supportive care of the families just like in the adult palliative care world. It's appropriate at any stage of illness but it's most effective when made available as soon as a serious or life-threatening illness is diagnosed. Where pediatric palliative care consults take place can be inpatient soon after a diagnosis that has required hospital admission. Some will have their initial consults and follow-up outpatient and some may even do home visits depending on how their team dynamics are set up and their resources. How to get into pediatric palliative care, generally it's a primary physician who places a referral but families can also request a palliative consult or self-refer. And then who is part of the palliative team is very similar to the adult world. There's no set roles that a team has to have. You generally have a physician, nurse practitioners, nurses, social workers, some even have chaplains and psychologists and bereavement specialists. And in the pediatric world, a lot of the pediatric palliative teams are also hospice teams. And so the families are able to get to know the team before needing to transition to that hospice care at end of life. Next slide, please. To muddy the waters here, we'll talk about the concurrent care model. So palliative care is often initiated like we talked about the time of diagnosis for a life limiting or life-threatening condition. And it's focused on symptom management, addressing psychosocial and spiritual needs and goal setting for the patient and family. Hospice services often incorporate the palliative care approach but are usually limited to a specific timeframe preceding the end of life. So the issue of a comprehensive palliative care model for going curative therapies to pursue hospice care has been one of the largest barriers to obtaining hospice and palliative care services for children. And because life limiting conditions in children are commonly really unpredictable, adult definitions of hospice care, which includes specific prognostic factors and for going curative therapies to qualify offer substantial impediments for children to obtain services. So as part of the 2010 ACA that was signed into law, the concurrent care for children section of the law allows for curative or life-prolonging treatments targeting underlying disease while also helping allowing the child to remain eligible to receive hospice care. And I generally recommend families still transition from palliative to hospice care when their goals of care really transition from cure or reversing effects of the serious illness to comfort in the last days, weeks or months. So, and like we talked about many of the palliative teams also do hospice and of life care. So a lot of them already know the team and it's not as significant of a change for them to transition from palliative to hospice, but it does allow for more resources for the family to allow more support. Next slide. Okay, so what I'm gonna talk about today is based totally on my experience. So seven and a half years ago, I lost my husband to cancer. So he was diagnosed in 2011 and at diagnosis, it was staged for a metastatic. So we knew the outcome, you know, me being a nurse, he was a medical executive. We knew what to expect. So what we were faced with is, you know, what was coming down the line for us. So initially, palliative care was actually never suggested to us. So bridging on what Nicole said, only 14% of people are recommended to it. And I would absolutely agree to that and that it does reduce the cost. So is it the right time? And I would agree with the previous two speakers that I feel based on my experience, the right time is at diagnosis. Because palliative care, as the speakers have said, it's not hospice, it's not stopping treatment. Although we had a life expectancy of approximately a year and a half, he was far from the point of giving up. He had too much left in his life that he wanted to try and experience with his family. So to me, there's no wrong time to do it. It definitely is individual. And I think what we need to get across is that it isn't giving up. It's just providing additional support. And what does it mean to the patient's care and the family's care? In my experience, it improves it tremendously. For my husband, it helped his pain. It helped his side effects. By helping the patient, it helped me. It helped his children. Because seeing your loved one in terrible pain or the other side effects in no way to help them, that's what makes it so hard on the family member. And I think from my experience as a nurse and my experience as a family member, sometimes it's almost harder on the family member. And so that's why I think it's just, it's so important to get that on board to help them. To help them, it ultimately improves care. I mean, and why wouldn't we suggest that? What could possibly be a negative for suggesting it? As long as you make it clear that we're not suggesting this to stop your care, palliative care is just another added treatment. Like you change your chemo or you change your heart failure meds and now we're adding something else to add on to it. And what happens if we don't have these conversations? We just can increase the pain and suffering the family needs. And it helps the family prepare for the future. And we were blessed to have a palliative care physician and I don't know if anyone is listening from Texas, but Dr. Dan Eppner, who was out of MD Anderson, who I think his advice to us is something that I can never be thankful enough for. My husband fought to try and stay alive as long as he could with good quality. And one of his goals, which is important to discuss with the family is is there something that is really you're looking forward to? And if there is, is it possible to move that up a little earlier? And what he was trying to shoot for, so to speak, was his oldest daughter's medical school graduation, which was at this point about nine months from when he was really not doing well. And Dr. Eppner suggested moving up the ceremony, if we could, because he would be involved in hooding her. And that was a major, major thing for him, not only to see her graduate, but to put that hood on his daughter. And at first he said absolutely not, and she said absolutely not because it kind of admits that we're coming to an end, but ultimately they did agree to that. And we had an early hooding, which was about eight months before she graduated. And we have pictures and no one would ever know that it wasn't the actual hooding of her that day, except that it's in the backyard, not on a podium. But it was something that really helped close something for my daughter and she's able to have that memory. So that's just something that Palliative Care can do. It can help you plan. It can help the family. And it's to me priceless. So next slide. So what are the most frequently encountered patient safety issues within palliative care? Patients who are eligible for palliative care have chronic illnesses. Chronic illness is defined as a physical or mental condition that lasts for over a year, causing functional restrictions and requiring ongoing management. Over 133 million people in United States have chronic illness, contributing to 90% of the nation's almost $4 trillion healthcare cost expenditure. These patients have complex medical conditions and are susceptible to communication or medication errors due to their multifaceted disease involving multiple professionals. More than half of all chronically ill patients died during hospitalization with a focus on curative treatment, not symptom management or goals of care. Palliative care safety concerns are often encountered due to the lack of standardized definitions and processes throughout the organization. Nursing or provider comfort or knowledge, the patient's goals or preferences are not taken into consideration. And advanced care planning is not discussed early in the diagnosis or at all. So what is a medical error in palliative care? A medical error is defined in palliative care as the failure of a planned action to be completed as intended or the use of a wrong plan for achieving the aims of preventing and relieving suffering from pain and other physical, psychosocial and spiritual problems. I bet many people do not look at palliative care in that sense and that it is a medical error when we are not providing pain and psychosocial spiritual needs for patients. Inadequate symptom control or failure to identify symptoms are huge safety issues. We need to be able to identify cues that patients are in distress when they're unable to speak for themselves. We need to ensure to look at the patient holistically, ensuring that the patient is receiving the right medication to alleviate symptoms without causing additional side effects. For example, providing a patient with end stage liver disease morphine would be inappropriate as morphine builds up in their system and they're unable to clear it. So providing something like delotted with a shorter half-life would be most appropriate. Prognostication is one of the hardest things to do in one of the most uncomfortable topics for providers. No one has a crystal ball, but you can provide both subjective data from the patient and objective data when looking at the patient's history, what the patient is saying, labs, number of admissions, et cetera. Research shows that three or more admissions in a year for the specified illness shows a high risk for mortality. Communication, failure to communicate will get you every time. This includes active listening. Listen to what the family and the patient are saying, delve deeper into what they are communicating or not communicating. What is their body language saying? Keep an open line of communication with your interdisciplinary team as well, such as case management, social work, pharmacy providers, et cetera. Advanced care planning is another potential safety issue. Assessing readiness is key. As stated earlier, advanced care planning is most beneficial when performed early in the disease trajectory as patients become quite ill as they near the end of their disease process and may not be able to participate in the plan. Identifying the correct person that is to assist in the patient's healthcare decisions is important. Many safety issues occur because we are not talking to the right person who may not be in alignment with the patient's goals. Next slide. So what are the consequences of a lack of palliative care? Depending on where the patient is on the life trajectory, the consequences vary. As previously stated, palliative care should be initiated early in the disease process. Early palliative care can provide the patient and the family or support unit the resources and knowledge needed to make informed decisions about their healthcare goals. By providing this information, the patient can gain back control over their life. Early palliative care is shown to improve quality of life and actually when initiated early in the disease process increases the lifespan. When palliative referrals are not placed or are very late in the trajectory, patients and families may experience moral distress due to the inability to complete bucket lists or failure to have control over their life. Healthcare members can also have moral distress when palliative referrals are not placed or placed late, leading to a poor professional quality of life. When patients have moral distress, this can lead to an exacerbation in their symptoms. These exacerbations lead to increased healthcare costs to include frequent readmissions, increased links of state and increased mortality. Palliative care consultations have been shown. If they are provided upon admission, there's a cost associated savings of over $3,000 per patient and over $4,000 per oncology patient. Especially during this unprecedented time, these hospitalizations can take away precious time with the patient's family leading to distress as well. Without early intervention of palliative services, many patients have shortened lifespans as their symptoms are uncontrolled. Our goal is to provide care so that the patient in the end cannot only have a good life, but a good death. Next slide. So let's talk a little bit about palliative care education for clinicians. I really do believe that every clinician should have some level of comfort introducing palliative care. Number one and number two, communicating with their patients, surrounding life lending diagnosis, breaking bad news. I call this our primary palliative care skills. Not every institution has access to a palliative care team. And so I feel like we need to be teaching how to have these tough conversations before our trainees have to do so in real life. Next slide. So what do our trainees think? So in 2015, Annie Jean Vieille, who is a neonatologist in Quebec, Canada, wrote a study where she looked at mock simulation codes where one code was a neonate born pulse list that does not end up responding to resuscitation efforts and a second scenario where the mannequin responds if correct resuscitation steps are taken. And as part of the evaluation of the trainees going through these mock codes, they asked how the trainees thought they did in each scenario and 78% of the trainees felt like the mannequin always improves as long as you take adequate resuscitation steps. And so the whole point of this is that's not real life, especially now made very pertinent in COVID times. And so they also asked the trainees, if they felt like they wanted to be exposed to doing everything right in their resuscitation and still having the resuscitation not work. And the majority of the trainees said, yes, they wanted that simulation training of an unsuccessful resuscitation despite doing everything right. So it's a super interesting study. I recommend you look at it when you have some time. Next slide. So how do we teach these palliative skills? One of the things I was told in my training way back in men's school now is just be empathetic, be compassionate, just be warm. But it's not really helpful to give lots of adjectives like that we learn mostly in medicine by watching, singing and doing. And 70 to 80% of communication is actually nonverbal. So a lot of what we will go through is just personal experience, watching our teachers, our attendings and watching for what we like that they do that we can incorporate into our toolbox and watching what we don't like that our attendings do and trying to reframe things or not include those things in our toolbox. I can't recommend enough medical simulation and resource courses like vital talks or lots of individual institutions put on simulation courses and there's more and more evidence coming out talking about how these medical simulation courses really do help us to fumble around in a medical simulation, not in real life. There are research studies and family feedback and then reading parental and family perspectives. There are a couple of things on this edge of the slide. Girl in Glass is a book written by a mom who went into preterm laborage 23 weeks and all about her experience going through the NICU and how hard and difficult it is. And I really just feel like our families deserve better so we should be practicing this in simulations. Next slide, that's the same slide. There we go, okay. So one of the most helpful frameworks I've actually found is the best-case worst-case ICU model developed by Dr. Schwurze and her team at University of Wisconsin. It is adult-based, however, I've used this a lot since my piece out of training as a communication tool with very sick children and infants and their families. So it's a great tool to ensure that the medical team and the family are on the same page. And I usually tell families, you know, the doctor on rounds, me if that's true or if it's in the middle of the night and it's gonna be a different primary doctor the next day. I tell them about this and ensure that they can ask questions and you can even get their permission to share this by email or text, which is especially helpful in recent COVID recommendation times. You may even choose to tape the template that we're gonna show in the next slide to the patient's door and it really helps the overnight team to know what the family was previously told so that the next difficult conversation is consistent with what they've heard before. So the gist of this framework is you're gonna talk about three stories with the family and really you're just trying to paint a picture for them and translate all of your statistics and knowledge in your head to something the family can help can better understand. So I usually say we're gonna talk about what we're hoping for, the best case scenario tonight or in the coming days, what we're worried about, the worst case scenario and then what we think is most likely to happen. And that doesn't always necessarily apply in the moment especially if things are changing very, very fast and it's a lot to digest in the ICU world too. But basically it's all about just telling a story to the family. So let's get into the nitty gritty details here. Next slide. So here's an example model that I kind of made based on an neonatal ICU patient. So I talked to the family and you can see each column is a day in the NICU or a significant event that has happened in the NICU that changes my prognosis line. So you see at the bottom horizontally along the bottom of the page you have your worst case scenario that you're going to describe. And then at the top you have your best case scenario. And then the star is usually like where you think they're going to be. And I usually just use bullet points. Make this as simple for yourself as possible. So here's a baby who is admitted to the NICU with breathing issues. So I'm hoping high flow oxygen will help avoid ventilation and intubation. However, I'm worried that there's an infection because of the labs that we've gotten and the X-ray. So we've started antibiotics and we're going to follow labs in another X-ray tomorrow and really watch how the baby does overnight. So that's the first day. And then the second day I changed colors there. So we had to intubate that morning. And so I'm talking to the family about best case scenario and hoping the lungs are going to recover with the antibiotics and that we just need time. But I'm worried because now I've had to add on blood pressure support. And I'm on one pressure support about to add a second pressure drip. And so I'm really worried that the organs are now going to be affected and that his heart is needing this blood pressure support. And then this is probably the point when I start adding this much support that I'm going to just be very blunt with the family, right? And say, I'm worried he may be more intensive medical support and that he may even die from this. And it's really important to just say those words because that's what the family is worried about. They want to hear you confirm their worst fears so they can prepare for them. If that's true in that scenario, if it's not, then be very reassuring. And then the, I think I just said five o'clock that night I did another column because there was a different event, right? I'm worried because more blood pressure support is needed we're at the maximum amounts and the liver is starting to show signs of failure. I'm still hoping that the antibiotics and that the blood pressure support are going to kick in and that his body will accept this, but I'm worried. And you can see each event that happens I'm decreasing where the star is on the line of how likely I think it is in that moment that if they're not showing a response to any of our medications I'm going to put the star lower to the worst case scenario or closer to the worst case scenario. And then by the next morning, it's great a different doctor comes in and they're able to paint a different picture. He came off one presser medicine overnight he seems to be recovering the liver labs look better. So the labs ended up showing MRSA sepsis. So we know now why this happened and we have a name for the family and we're able to talk about now his body is starting to recover. And so we're able to increase on the line where our star is that we do think he's recovering from this slowly. So that's a very detailed version of what I would go through and just a little bullet points for the family. So basically the story of your best case scenario and your worst case scenario may change day to day or hour to hour in the intensive care unit depending on how your patient is responding to our care. And so you just update it with each large change that you're having to talk to the family about you can call the families and talk through this you can send a new version of the diagrams you're able to follow. So the whole family is able to be on the same page. And I found it really helps the whole medical team to stay on the same page. You might choose if this is a very intense bad news conversation to instead of doing daily columns that you just do a more generalized one single sheet of paper with one line where you're talking about best case scenario worst case scenario and where I think the patient is and then if there's an intervention that you're trying to decide between you might do one line for here's if we have surgery for this here's if we don't have surgery what the projection might look like. And so it just makes it a much easier framework for me to describe to patient families. So hopefully this is helpful. I'll give you some resources on the next slide. Next slide. So the best case worst case framework toolkits are at this website hip exchange.org there's several different YouTube videos on this patient preferences project as it was built out of the adult geriatric world deciding and trying to talk families through whether to have surgery or not it is very focused on that. So there's that model the surgical model there's the ICU model and it's content and we're building a NICU model. So there's it's growing and growing and I find it very helpful. Another resource is vital talk.org you can take online intensive classes right now in this pandemic time. And then a non-pandemic time they have short like weekend two day courses with they bring in actors that play the patients or the patient's family and you're able to work on specific skills. When I went to my first course I really wanted to work through dealing with angry families. And so I made I asked that the actors were really angry and yelling because sometimes it's really hard to work through that and find a productive path of helping the family and figuring out where that line is for the day and maybe it's coming back and having a different conversation another day so they can digest things. Another resource my PC now.org is a palliative care network of Wisconsin and they have short one page fast facts is what they call them. So if you have symptom management issues it's a great resource. And there are a few pediatric ones but they're actually building a whole different site for the pediatric world. Another resource is courageousparentsnetwork.org and this is a family-based resource built by parents and families of loved ones who have had life life-threatening and life-limiting illnesses and having to think through guidelines and tough choices whether to do a tracheostomy for their babies things like that. Next slide. All right, so just to reiterate palliative care does not mean there's no more hope. So there's a study out of I really like to find interesting studies like this. This is a Dr. Fuehtner study from 2017 where he confirmed in the study that hopeful thinking actually led to more comfort in working with dying children or families and more palliative care competency. So the other thing I was interested in is how they measured hope. So that's an interesting thing. I'll try to go forward because I think we're starting to run a little bit short of time, I have too many slides. So look at this study if you wanna see how they measured hope and see that there's evidence that we can hope with our patients and be better at palliative medicine for it. Next slide. So the other issue that I hear sometimes from physicians and trainees is I feel like giving bad news is just going to dash my patient's hope and they'll give up on everything. So this led to my thought of, well, let's see if there's been a study on this. And actually there has been of course and there is a journal of clinical oncology study back in 2012 that showed that the worst thing we can do as clinicians is actually not talk about difficult prognosis at all. It's like we all go into a negative tailspin if somebody doesn't actually tell us the truth and where we're at. So they found that both in the adult world and the pediatric world with difficult prognostics that hope was found to be threatened when there were more often when there was no discussion held at all versus telling them bad news. Next slide. All right, Shelley, I'm gonna just, I'm gonna go off my slide for a minute and just say that as far as education and going back to my oldest who is now a, she's an ICU physician in LA. So what she's been hit with right now is mostly COVID patients. And unfortunately, she had little to no education related to how do you tell people that they're dying and how do you tell them exactly best case, worst case scenario? And that is just critical. During her med school and residency education, it really, it was very hard for her because she knew how palliative care had helped her dad. Yet many, many physicians were reticent to suggest it. And I think it's, a lot of physicians are reticent to suggest it because they feel that they're giving up on patients and physicians are not miracle workers. And there is a time where they can't do everything. So they can't cure your cancer, control your pain, control your nausea, care for your family. So it's, it's palliative care is grouped support. It has so many aspects to care for the entire patient and family. And as far as Shelley, when you were talking about your toolbox and following physicians and learning it, I laughed because what I told my daughter when she entered med school is, I'm going to give you a list of physicians of who I want you to be like and who I don't want you to be like from my 30 plus years of being a nurse. And it's very true. And you're not giving up support. And palliative care is just, as everyone has said, it's an adjunct to what you are getting. And we've all experienced it in our lives in some way or another. One of my favorite palliative care physicians too, I met him, but I haven't worked with him, but I wrote a book, The Best Care Possible. And what he says is treating the patient with compassion, humility, honesty, and what they want, which may not be what the physician wants. It's important to sit down and have a real conversation with a patient and family and know their goals. Some patients don't want help, others do, but you're not gonna know from looking at that icon on the computer without really sitting down and talking to the patient and the family. And if you wait until the very end when the patient really can't answer your questions, then it's too late. Next slide. And I mean, I almost think that Palliative Care has done a disservice because of the name and maybe someday we can change it to supportive care and then they'll realize that it helps support and helps support the patient, it helps support the family. And also as far as the safety and quality aspect that Nicole was referring to, it's the communication. And I think the first three major reasons for a medical error are communication, communication, and communication. And when you don't have that with a family, that's when you're gonna have the problems. And we wanna provide comfort that the treating physician may not be familiar with. As I said, oncologist treats cancer, cardiologist treat heart failure, but they don't necessarily treat the associated symptoms that go along with those diseases. And Robin Williams, bless his heart, wasn't a physician, but he played a great one when he was Patch Adams. And although he passed away from a horrible disease of his own, he said, our job is improving the quality of life, not delaying death. And we need to start treating the patient, not just the disease. And once we were able to get palliative care involved with my husband, I felt like he was being treated more as the patient and his family and what he wanted and what was best for all of us than just trying to hammer out that cancer, which we knew just wasn't going to happen. And patients wanna know, you know, what's going on. So that's, I think that was the last slide. Thank you so much everybody. And Sherry, thank you so much for sharing your story. I know how difficult that is. We'd love to spend the next 15 minutes answering some questions. Before I end the slideshow though, I do wanna remind everybody that we are offering CE for nurses, pharmacists, physicians, some respiratory therapists, depending on the state, healthcare executives and certified professionals in patient safety. So it will take about five to seven days to process this. So we appreciate your patience as we work through that. But let's go ahead and I'm gonna stop sharing and we can just get to some of the questions that we have, don't have too many questions, but so anybody in the audience that has any questions, now's the time to ask. I do, Shelly, I do wanna ask you a question about your best case, worst case scenario worksheet. Can you tell us a little bit about how you use that in practice? Is this something you use as a worksheet for yourself or do you share this with your families and the team? So I share this with my families and team. Like I will tape it up on the door or put it on their hard chart or let the family take it and take it home with them. I really feel like it's most effective when it's shared. So one of the things we learn as we go through, especially ICU training is usually someone at some point will teach you how to have a family meeting to break bad news or talk about how difficult things are going in the ICU. And they'll be like, bring a piece of paper and bring a pen and bring tissues. But, and they're like, usually it's just a spell words or something. And I was like, oh, we're not using our tools and our toolbox most efficiently. And when I came across this best case, worst case scenario framework, I was like, I know what to do with a piece of paper and the pen now. So I find it very helpful to share. I don't feel like it's something that has to be used or is most effective with necessarily every family or every scenario. If I get a, what we call a feeder grower, baby who's admitted to the NICU who really is just born a little early and working on feeds, I'm not gonna pull out the best case, worst case framework on this family and make them talk through worst case scenarios. Cause they're already gonna be worried enough being admitted to the intensive care unit. But I will absolutely pull this framework out with a perinatal family who has a diagnosis of trisomy 13 or trisomy 18. And we're trying to talk through what the different organs that have been affected and what interventions might be possible and talking through the best case, worst case scenario of each organ or each intervention that might be done. Great, thank you, H. Ally. Oh, there is a question about long-term care facilities. Do you have any experience in palliative care in long-term care facilities? I don't. And it is something, especially in our community, we currently do not have an outpatient palliative program which limits what we can do. We can do everything the right way to set people up with the goals that they want. But if they're, when they're discharged, that kind of doesn't help us to close the loop. So that is a process that we're working towards for an outpatient palliative program and the long-term facilities will be a major part of that because the majority of patients in long-term facilities are that picture that we talk about of comorbidities, chronic illnesses, complex patients with multiple professionals involved. And I do see that that would be a huge turning point for quality of life for people in nursing facilities as well as looking at healthcare-associated costs. Thank you. There's also a question about that Denise has asked us. She asked whether or not you think that physicians maybe don't introduce palliative care because of the additional medications that may bring on other complications because of polypharmacy. Does anybody want to address that one? I'll address that from the non-physician point. I don't think that's true at all. Palliative care physicians work as part of the team with the other physicians. So it's not like they're going in blindly and just throwing meds without looking at what the other patient, what the patient's receiving. And if the patient's receiving meds from the treating physician that is making them uncomfortable, not being able to tolerate the meds, then by not giving them medications to help those symptoms, then they're not serving any purpose. So, for example, my husband, when he started seeing a palliative care physician was receiving the appropriate pain meds, the appropriate medications to alleviate the side effects from the pain medications, the appropriate medications to treat the nausea from the chemo. I mean, these are all medications that the treating physician could have prescribed but didn't know the correct medications to prescribe. So I definitely do not agree, in my nursing opinion and my family opinion. I'll actually add on to that if it's all right. I actually, from the intensive care perspective inpatient have definitely seen this. It is a barrier when palliative care teams, especially pediatric palliative care teams are introduced at children's hospitals because we all think we've been trained super well at everything. And if you work in the ICU, you have to be good at death because we have dying patients every day or every week or whatever it is on your unit. And so of course, we're very good at what we do, but that's actually not, I really encourage a speech as physicians and practitioners in healthcare to really challenge our own perception of what we are good at and our strengths and our weaknesses. And the studies actually show time and time again, we are biased in how we consult our families. And so now I actually tell that to families like my perspective is skewed because I spend so much time in the neonatal intensive care unit. So let's talk about that up front. And now I'm gonna tell you, here's what I think, but also I don't see many NICU patients outpatient anymore. In my training we did, we followed up in our outpatient clinic and got to see the babies who go home. And so it really skews your perspective on morbidity and mortality. And I think it's a myth that we really as a palliative care field have to correct as we move forward. Is that it's not just another doctor coming in throwing medicines at symptoms that palliative care should be another tool in your toolbox of how to holistically treat the patient. We should be working together as a team which isn't always easy when there's multiple specialists involved in the hospital. But I have to say, especially in the pediatric world some of the best communication between teams has happened when I've seen palliative care become involved. It's bringing in that neurologist. It's bringing in that GI doc. It's bringing in the Peds intensive care doc all together in one meeting or having one person do all the groundwork to bring everyone to the same page of, hey, the palliative doc brought up this or the GI doc brought up this. Let's talk about what we want to present to the family. Because there's a lot of behind the scenes work sometimes in the symptom management. There's a lot of it is trial and error. And what is the best evidence we have right now to treat these symptoms? So I think that's something we still need to correct is that myth of that we're just going to muck up the medications on a patient. Yeah, yeah. I see. Oh, go ahead. I was just gonna tail that just for a second about one of the issues to a with palliative care is that as you were talking, describing nephrology and cardiology, palliative care has not been seen as a specialty. And so I think that is another mindset that we have to change that palliative care is not coming in to take over. We're not coming in to change the whole plan of care. We are a specialist just like cardiology comes in and focuses in nephrology. But we, as you were saying that we're an adjunct, we're there to support and kind of bring everyone together and be on the same page. Which is not always that easy to do, is it? Shelly, I see that you answered a question about non-English speaking patients and communicating with them. We have just a few minutes left if you want to share what you answered the rest of the grid. Sure. So the question was that we, or the comment was really that we focused a lot on communication and provider education and training, which is great, but we haven't really talked about diverse, serving diverse communities and language barriers experienced. So this is actually, I did a lot of my training in Southern California and then in Chicago for my hospice fellowship. And it's very, very important if possible when you bring in interpreters to the situation, if you can give them a quick debrief, some pearls before you go in to have a difficult conversation. I found it much more helpful. Even if they just have two minutes to mentally prepare, we're going to be talking about that this patient is dying in the ICU, that it comes, it's just much smoother. It's very hard for the interpreter to be shocked at the same time that the family might be shocked. That's a lot of stress and trauma for the interpreters to go through. I found it a lot more difficult these days by phone, but it's still possible, especially if you're able to do it by video. If the family doesn't speak a lot of English, I feel a little bit more free to say, to give them a little heads up on the camera, or sometimes I will connect outside the room and tell them the situation and then we'll roll in with the like computer on wheels screen together after I've given them that little spiel. I find the same thing is helpful when we consult chaplains as well. My previous rural hospital was a very religious institution and they had a lot of lay religious people who would come in to give babies blessings. I find it very heartbreaking to have someone come in trying to bring comfort to the family of a child who is clearly dying in my eyes, but the chaplain person would come in and bless the baby that they're going to live and overcome this and have a beautiful life. And that negates everything you just said. And I'm not saying you have to take away hope, but sometimes if you can prep them before they come in to give the blessing of, hey, in five minutes, we're about to give a dose of morphine and pull the breathing tube and they're going to hold their baby until they pass. That gives them a whole different framework to work with before they go in the room. So I think preparing your consults and interpreters and extra people as they come into the scenario can be life-changing for the family. Great. Well, I don't see any other questions from the audience. So last chance, if anybody has any other questions to ask our panelists today. In the meantime, I wanna take a moment to thank our panelists. Thank you all, Shelley and Sherry and Nicole for joining us. This has been a great conversation. And for the members of the audience, you may have missed, oh, here's another one. Oh, thank you, thank you, Denise. We will have a copy of this presentation, the video and a copy of the PowerPoint posted on YouTube, hopefully by tomorrow. And of course, as always, if you have any additional questions that we didn't answer today, you can feel free to email us at clinicalatpatientsafetymovement.org and we will pass on these questions to the panelists. So it looks like we are good, no more questions. Thank you, everybody. We really appreciate it. Have a wonderful day.