Chapters Transcript Palliative care My name is Robert Zack. I'm the medical director of Palliative Care, Hugh at University Hospitals, Cleveland Medical Center. And my talk today will be on palliative care in neurological diseases. Unfortunately, I don't have any financial disclosures, which I did. I'd be a lot richer. Andi I am vital talk faculty and vital talk is one of the gold standard for communication trainings. I do not receive any any funds from them for being faculty in today's talk will be describing levels of palliative care and also help you recognize key frameworks you can actually use for discussions for things like goes of care and code status discussions in neurological disorders and also help recognize that prognostic disclosure is important despite uncertainty. There are two levels of power of care, and when I talk about power of care, I actually really like the center to advance part of Kerry's definition, which is the specialized medical care for people living with the serious illness focused on providing relief from symptoms and stress of a serious illness. And the goal is to improve quality of life for both the patient as well as the family, and it's provided by especially trained interdisciplinary team with nurses, doctors, another specialist and provides an extra layer of support. And in some cases, actually we are the main support, and it's appropriate at any age and any stage of disease and can be provided along with cured of therapies and with primary power of care. This is essentially what we want everyone in the community to be able to dio to provide basic management of pain and other symptoms like depression, anxiety, shortness of breath and other symptoms. Discussions about prognosis goes of treatment and outcomes, suffering and code status. Secondary palette of carries a lot of what I do as a special as a specialist in specialty part of care where we help manage re factory symptoms like pain, shortness of breath, delirium and other symptoms manage more complex depression, anxiety, grief, even existentially distress and assist. Assist with conflict resolution regarding goals and methods of treatment, such as with within families between family members and staff, as well as amongst treatment teams, and also address cases where there may be medically ineffective care being provided, and we were often called in to assist with a lot of those discussions. So there are several domains in power of care, some being physical, like pain, constipation, delirium, psychological. Where there's anxiety, there's a lot of care burden, especially if you look at neurological disorders. There's such great impact on on caregiver burden on not only the care of the patient but also the impact of that on three caregiver. There's spiritually needs that need to be addressed and and evaluated. Here we have many people may have had a death in their family recently or remotely. If you know they've lost a child and they could still be angry. I got, for example, and so many of these require require this issue to be addressed to help them live better and and be able to cope. Also, communication where we discuss goes of care options of care also. So, for example, for someone who's just had a massive stroke thinking about thinking about how toe move forward for this person, is this someone who really valued eating and, um, and having ah tube would not be consistent with, or it could be consistent with how they want to move forward or if they were unable to be independent. Is that quality of life that would be okay for them or not. Or, you know, thinking about someone with something like a elsewhere. Now, ultimately, they will have many other problems with respirations and and feedings and figuring out what type of life they'd want to live and what they wouldn't want to live with. So here's this video by Dr Jaren Jared Burstein that I'd love for you. Toe, listen to him. Hi. We got to call that this house is on fire. How can we be helpful? Well, the house is on fire, but I am worried. If you go in there, it might send the wrong message. Wait. What? I'm with the Fire Department. Yes, I know. I think you could be really helpful, but I think the family might be worried. Something is wrong if the Fire Department shows up at their house. But something is wrong. Their house is on fire. Do you think there's any way you could talk to them but not use the word fire? What? I just think if the family hears the word fire, they might lose hope. But I am with the fire Department and I am here to help this family with their fire right, Right. Totally. I think you could be really helpful, but I'm just not sure this family is in a place where they're ready to meet the fire department right now. Can we call you the water support team? So you know, quite often patients who have, um, seriously illness many of our patients with strokes and whether it's, uh, shikimic or large bleeds. They require meaningful discussions and honest discussions about what's going on and and, you know, there's a huge that's the fire. And quite often we tiptoe around it about what things really mean and what what we do is we We bring light to, um, the darkness that's that's around them and, um, and really help address a lot of these important issues, including things like prognosis. When it's indicated. Here's this important tool that you can actually use. It's It's a combination of both the area and the labs. The area in the labs, uh, seriously on this conversation guide a Zola's hybrid of what's used in a vital talk, asking people about how they like to receive medical information. And who would they want their for? The information? Quite offense. Information can be overwhelming to people. And they may say, You know, I'd like my partner or spouse or or Children there to receive this information if it's going to be very difficult and then asking about prognosis. And if people want to know, it's important to share. If they don't want to know, we need to figure out who we can share this information with. And with news comes emotion, and we really need to address in. That's something we don't do enough in health care. Then after that, taking a step back and asking about what's important to people, what do they value, what air they're hoping for? And then getting that information and mhm and helping people understand that you've heard them on aligning with them. And if there's a discrepancy between what they've shared and what we know medically, then it's important to address that and then make a recommendation based on people's values and goals and so sharing information, um is really critical with permission again, again asking about how they like to receive information and whether we want they want to know prognosis and after you share this information a lot of time for silence because it gives people time to process information. You'll be surprised quite often when when we see this happening, we try to fill in the gap, and that's not always helpful for patients and families. So allow silence. And then afterwards you can give it 15, 20 32nd step is going to sound like a long time. It's gonna feel like a long time, but it's needed then, after that, explore the emotion and say something like This is so upsetting. I see that, or this is something that is really hard to deal with and hard to hear, and and that will help you really connect with the patient and family. Regarding prognosis, most surrogates actually want to know prognosis, even if it's uncertain. So there's a study that was done out at UCSF, um, where they They conducted semi structured interviews with about 179 surrogates for about 140 to incapacitate sedated patients at very high risk for death in an intensive care unit set at UCSF. And here they explored surrogates attitudes about whether physicians could should discuss prognosis when they cannot be certain their prognostic estimates are correct. And here surrogates believe that that prognostic uncertainty was unavoidable, and it leaves. It leaves room for a realistic hopes about the future. It actually increases surrogates trust in the clinicians. And and for them, physicians are the only source of prognostic information. There's a lot of information on the Internet and things, and and, you know, we know Dr Google isn't always correct. And also, you know, it actually helps signal a need to prepare for possible bereavement. And out of all these, all these ah 142 patients. About 28% of them were neurological. And so I think I think it's a key framework to think about. Um, quite often we are. We are resistant to share information because of our uncertainty, and it's important to recognize that people want to know. And so framing could be. Here's the best case scenario. Here is the worst case scenario, and this is most likely the case and help them recognize that you don't you're not going to leave them, you know, making a decision can be really challenging when we don't know what may happen and and you can say something like, I want to assure you that I'm here for you and that we will find a way forward together and we'll get the right people involved. And again, when you're addressing emotion, you could say something like I can see you're upset. You could name the emotion Many people in your situation would be frustrated and perhaps even angry. That's another naming and then understanding can be something like this is this is very hard or I can't even imagine what you're feeling right now. This this is this so tough and and then respect to, um to give respect for their efforts. You've done a great job taking care of your health, or you've done a great job taking care of your family member who's and I can see how hard has been for you and and often they're still alive because of you, right? And it's really important to recognize that and help them recognize that you've recognize this and then offers support. I wish I could predict what the future will look like. I'll be there every step of the way and then exploring Maura about what they're feeling. Tell me more about what's wearing you, and and if there's something that you want them to clarify you concede a something like, Tell me more about what you mean by this too, sir that, and and really be curious. And you know, 11 thing that I like to mention is that quite in health care, and even when we get to know people, there are some key things that are really important. Number one, curiosity and then number two having inquiry. So you know, I've given you some of the frameworks to use. And then next is president's troop presence to know that you're listening. Look him in the eye, be at I love whole. So some key components to really providing excellent care. And then after you address their motion, they may say something like, So what's next? And then you can you can say well before we before we talk about what's next. Let's just talk about first. You know what? Tell me more about your loved one or tell me more about you, about what are things that bring you joy. What? And now that you know about what's going on, what are you hoping for? What's important to you? What are some of your fears and worries about the future and What are some abilities that are so critical you can't imagine living without them? Which would I like to call? Minimal acceptable outcome? How critical is there for you to be ableto have your cognition intact To be able to interact with people, To be able to, um, to be to have, ah, fun conversation? How could it go? Is there for you to be able to eat on your own? Where are you okay with temporarily or permanently having a feeding tube where you're getting artificial nutrition through a tube? If it's indicated, how critical is there for you to be able to walk on your own? Or are you okay with if someone were to be able to move you around in a wheelchair? If that's achievable, how could it goes there for you to be able to clean up after yourself after you've soiled yourself or need to use the bathroom is a critical or is that important? And many of these change over time for some people, especially if they've been sick. You know, if they've had a stroke and a lot of their ideals are being met by the nurse in the hospital and you know there may be a time where they say if they are able to communicate, they could say something like, You know what? I'm okay with being taken care of like this, whereas others may say No, that's not This is not dignity for me and remembering that every individual is different. And then finally, you know how critical is it for you to be independent and then thinking about maximal burdens people are willing to go through? What are you willing to go go through for the possibility of more time? And have you shared your wishes and goals with your family members? Or have they shared that with you? If you're speaking to a surrogate and then when you're aligning briefly summarize what's what's been shared? And that could be something like, it sounds like Here's what's happened. You recognize that this is been very difficult, and this is what would be important for your loved one. And if there's a discrepancy, frame it as I wish and I worry statements. So you know, I wish for I wish that you know he can walk out of the hospital and I worry that time may be limited and there's a chance that he may not even be able to make it out of the hospital and the wishing. Actually, you could actually still be realistic, Ben, and still hope with people and then making recommendations based on what's achievable and what's consistent with their goals. What I hear you saying is that this is really important for you. I think based on what you've shared with me, I recommend this pathway. What are your thoughts on that? And then that can create for the dialogue and clarification as to what people really want. And so thinking about some of the literature that's out there. There's variable data on, uh, impact on power of care in neurological disorders. This was a study that was done recently out of the Czech Republic, looking at 151 patients with progressive neurological disorders, Um, and 140 of their caregivers. Where they did, they're looking at Quality of Life Index is, and they were either recognize to a part of care arm or a or their usual care. And the power of care arm had, uh, interdisciplinary power care team, which included clinicians, um, physical therapy, occupational therapy. Um, and it turns up those in the intervention. Armed with power of care, they actually had better symptom control. They had better emotional functioning, social functioning. Many of their spiritual needs were addressed on globally. They had better quality of life. And when they were, when this was asked of the caregivers, they felt that these symptoms were improved. Their emotional functioning was improved spiritually, needs were addressed and globally, their overall quality of life was improved. And I know Dame. I mean hiking Higginson out in the UK she's like one of the godmother's, a palette of care there, and she's done a study with patients with M s. And, um, I don't think she's published this yet. I haven't been able to find it, but, um per our discussions while ago she patients lived about six months longer in that study, Um, and so I'm still waiting for that to be published. But there's there's data that's coming out to show the impact of part of care on either quality life, length of life and other other factors. And, you know, cost of care is another is a hot issue, and so quite often you may hear. Oh, you know, my patients not ready for power of care. They're not at the end of their, you know, they're not at the end of their lives, and that's not what part of care is. And and a pound of care encompasses not only end of life, which is a small part of a lot of what we dio, we deal with anyone with any serious on this. And so you know your patients with, um M s and, um PSP and other atypical Parkinson's disorders Parkinson's. Um, you know, it turns out many of the symptom burden, and in a lot of these patients, air as much as patients with cancer or advanced cancers, and power of care can help. And the goal is to improve quality of life for not only the patient but also a family and and quality Life is essentially what I but I say I am. I'm a quality of life doctor. Whereas hospice, it's for people in America. Hospice is described as a service for patients who are in there who are terminal in their last six months of life, where comfort is the focus and the foregone aggressive care and it turns out, in a lot of the literature that's out there generally is that when people who meet criteria for hospice who meet criteria for palliative care, not only do people do better, but they live longer with it than without it. And I thought 11 he think that's really important to hear is that you know, many of us who work in the hospital, we see that you know, there are a lot of patients who actually die in the hospital. But when asked when asked before you know where they want to die, a majority of people say they wanna die at home. And so thinking about Parkinson's disease in this study, it showed that about 43 patients 43% of patients with Parkinson's disease die in a hospital, and about 56% of patients with M s actually die in the hospital and those who and those same patients when they there are very few who are actually admitted into hospice and when they're admitted in hospice, it's actually very late and often days that they're alive on hospice and so I think there's great opportunity here to for earlier referrals ah, to hospice and eso recognition and actually discussion. Active discussion about things like prognosis, I think is going to be really important. And, as you think about these patients, who it's who are seriously ill with neurological diseases and so some key takeaways, let's start with these important discussions. Use primary part of care tools like that I've described here. And, um, you may learn something important about your patient and their families that they may not have shared with anyone else and that you ate CMC. We've actually created these slim cards for providers where and that includes the many of the tools that I talk to you about asking about information preferences on when you're sharing news, asked tell ask, Ask them what they understand. Then tell them in a short snippet like a headline, and then ask again if a lot more information has been shared. So you make sure that they understand, and then asking about prognosis what things bring them joy there, things that they're hoping for their fears and worries their minimum acceptable outcome maximum burdens, as well as figuring out whether they've spoken to your fans, family members on the other side of the storm card are the seven minutes, um, seven minutes about how out of care. And we're hoping that, you know, if someone were to say, You know what off cares end of life care, You know, we don't This patient doesn't meet that criteria, and and you can actually say Actually, no end of life care is a small part of power of care, and they deal with an array of patients with various symptoms, and they aim to better control symptoms and help figure out patients preferences for care. And so that's all there with the resource is, and then consult how to care if you need additional help or for more nuanced discussion and symptoms. And so I remember being called in the issue in the past month or two, where there's a woman who had, ah, large bleed, had some shift in the brain and in addition to this, had multiple complications with pneumonia and multi organ failure. And the husband was there when we were helping support him. And when I asked when I use thesaurus Simmons conversation guard when I asked him, What are you worried about? And he said, I'm worried that my my Children would hate me if I stopped continuing doing what I'm doing. And I said, Well, you know, it looks like let's bring your Children to the conversation because I think they need to know what's going on And they actually lived in the Philippines. And so what we did is arranged Zoom call got the kids involved and they recognized Whoa, wow, my mom's really sick. Looks like she's going to die and and and several days later, a couple days later, actually, you know, we he was agreeable to comfort care, and, um and had I not asked that, I don't think he would have shared that. And I think also created environment, a safe environment where there was trust. And a lot of that was because he felt my caring that was truly present for him. And when having these discussions a lot of time for silence, it allows people to process information that's shared, and lastly, you know, there's ah, there's a lot of opportunities for growth and research in Europe out of care, and I'd be happy to collaborate. There's, um, way actually did study of my previous institution where we, uh, worked with patients with atypical Parkinson's and did virtual visits for them. And it was really a feasibility study on that data should come out within within the next six months or so. Hopefully, we can get that published soon. Um, but you know, patients, I mean now with after with the pandemic here, I think there's a lot we've learned in terms of how weaken, communicate and as well as help recognize that we don't need necessarily need your burden families with commuting for three hours to come see us. So I think there's a great opportunity for growth as well as research in many of these domains. And if you have questions, please ask him now or feel free to reach out to me at Rob that Razak it you at hospital dot org's. Or you can always DME to on Twitter at Robert Sock. Thank you. Okay. Thank you. Okay. Good afternoon. My name is John France, and I'm a nurse practitioner who currently works in the support of oncology program. But I've had experience with palace in medicine for the past 20 years and have been involved in cancer. I've been involved in neurology patients and of the specialties as well. It's like, Rob, I have no financial relationship to any drug manufacturers of services that I can benefit from financially, or I don't present anything that is not FDA approved. In fact, I don't present anything, Uh, that goes towards medical devices or medications. So Rob have talked a lot about you know, the misconceptions that we have about politic care. We often compared to end of life care. And there was a really good, um, editorial many years ago that was talked about end of life care, which is that death of palace in medicine. Because one of the things that we do and people don't understand is that we really go in and talk about the big picture. And we talk about the goals like Rob talked about in his presentation, and none of it actually lived to lead to the patient, to die or to give up. I've seen patients over the years that have lasted many years after I talked with them the first time. In fact, the one of my very first patients in palace and medicine just died a few weeks ago, and she had lived with her life limiting illness for 20 years. So what I'm trying to say is that you don't really have to be dying to be referred to Apology Care Program. A lot of times, what we heard and Rob alluded to that as well is that you know what? We need to get the permission either from the family to talk to the patient. My question then is, Do you think that a referring physician will ask permission to refer a patient to neurology to cardiology? Alternate froggy? The other thing that we hear often ISS or this patient is on palliative care. Like, you know, do you say about your patient there on neurology? We talk here often their patients or their families, not politics. Ready for politic care yet. Um, do you have to be ready for politic care? Are you ready to see a neurologist or non Ecologist when you diagnosed with the cancer? Well, just asking. And I think that one of this, uh, stems in that people often incorrectly equate us with hospice. So there's a host of neurological disorders. We know that and I have listed here Cem disease categories that really can benefit from politic cares, involvement all the dementia. Sethi A L S. M s, um, Jacob Creutzfeldt Disease, Huntington's disease, Parkinson disease. Then there's a different group that kind of like can be categorized with sudden change in neurological functions like the cerebrovascular events and the Strokes. We have two more patients. Um, again, the misconception is that politics has only for cancer patient, which is not, and I think that these two presentations should shed light of that. And then we often get called to the intensive care unit, the neuro intensive care unit and in the neuro intensive care unit. It's often people with interest. Cerebral hemorrhages are other several vascular events, trauma or post operative outcome that's different than expected. Once you do get palace of care or palliative medicine involves, well, it should really, really be initiated the time of diagnosis or early in the disease trajectory. When you have somebody with a life limiting or serious illness on, I think that a lot of the illnesses in neurology are considered serious at the outset. It is really a medical specialty, and we focus on physical, physical, psychological, social, spiritually needs in the patient and the families I often talk to families about my unit of care is not only the patient but also the families. We will continue seeing the patients throughout the disease, and for some people there is secure. But if there is not a cure or or things go in a direction that that leads to the patients, that we will certainly continue. And as Rob said, there's a small group of patients where we get involved with end of life care, for we transition patients to hospice. We can talk about essential components of the policy medicine, first of all, symptom control. There's 52 different symptoms, and some of them are present in various degree in the neurology patient as well. We and Rob went into great details. With that. We assist in goals of care and decision making. Um, often because with a specialist in that we have slightly different approaches to things and and talk to patients and families about what it's important we look at and assisting the management of complications from the disease itself. For the treatment, for example, I work in the cancer center and sometimes we see small bowel obstructions from the cancer in the gut. We have patients who are getting chemotherapy. That will lead to as a side effect, no Europa thean. Some of those neuropathy. These can be really challenging. We talk about social psychosocial care, the patient and the family. I think that after Rob's talk, communication is a key part, and then in a small part of subsidy or a small subset of population, we also do care of the dying. Rob talked about symptom control. There's a number of studies set indicate that we should really do a good symptom assessments. And there's also a lot of studies that are talking about that. The symptom assessment in many neurological patients are lacking. We talked about this study related to advanced Parkinson's to seize is very similar to that in metastatic cancer. I'm just saying that when I was reviewing for this talk, that was a surprise to me. Um, one of the tools, if you do decide to go into looking at symptoms for patients in with neurological diseases, the very valuable tool called the Edmonton Cem Symptom assessment scale, which is validated, and there are lots of publication where it has been used. I think we need to look at when we assess symptoms and differentiate was the ones that are related to motor function and cognition. Um, we also need to look at the non modoff function and cognition, and again, the reason for the patient having them is varying. It could be depression, anxiety, fatigue, sleep disorders, constipation, urinary urgency and sexual dysfunction. And the list goes on their studies from different population. Who has shown that non motor symptoms maybe function limiting from many patients. And it will influence the care, give a burden and thus influence the overall quality of life not only for the patient but also for the caregivers. I think that we need to look at when we have identified a symptom that aggressive assessment need to continue. We need to implement pharmacological management of non motor symptoms, and that should really be a priority to enhance the patient's quality of life and the caregiver burden neurological patients multi symptomatic. And, as Rob said, we need more work in this area. And from a nursing perspective, I'm certainly happy to help anybody who wants to embark on that journey as well. Heavens, care, planning, advance care Planning is something that we like we and when I say we as people, whether we are health care providers or patients or families we don't really want to talk about. There's interesting evidence to show that the providers expects patients to bring it up when they were quote unquote ready for it and then their patients. That and families that think that we will bring it up. And in that way nobody brings up the elephant in the room. Some people haven't or most people have not done it or completed an advanced directive or living well power attorney. And when you see patients and you need to have decision making, particularly in the acute care patients, it can really be problematic. I think that we have a responsibility to discuss these things with the patient and the family. Shortly after a life limited that diagnosis, it should be documented, and the P o A. Should be identified, and what documentation we have should be placed in the electronic medical records. It it's not an easy topic to speak about. There is a website called Prepare for Your Care Door Doc. It's created by the University of California, San Francisco and is very simple. It's a very good guidance for patients who want to see it and do it at home. It's online, and it talks about different scenarios and what to talk about and really give you, Ah, hand to hold through the whole process. As I said, the documents should be in the physician's office health care facility, so it's incorporated in the medical records. There's some specific needs for the neurology patients. Um, that's not unique to the neurology patients. But you know, the classic is a CPR long term mental, Asian and information. But, you know, with Parkinson's disease, a less and a few others, we need to look at things like feeding tubes. Intubation is really valid, paramount, because some of these patients will either have aspiration pneumonia and have failed respiratory efforts, And I kind of like, say directly that he should be addressed. One of the things that's helpful when you have advanced care planning is it's helping the support to support the caregiver, and when you have an overall plan, it prevents its prevents burnout. I think one of the things that we need to remember is that we need to have an ongoing physical assessment at the bedside. I cannot stress enough that nurses at the best side having in the probably the most important role there by the patient's side. They're talking to the families. They're in with the family of the spouse of sons and daughters. And they are the key shit piece of information, at least that I turn to when I need to talk. When I do a consult, I think through that process you'll identify issues, the physical issues, the psycho social issues, the caregiver issues. How often do we not here? The wife say that it's really difficult to handle anymore because my husband is kind of like going downhill, and I don't know how long I've been taken, and here's like a unique opportunity to identify the things that they need help with. Yes, we just talked about advanced care planning, so we know what's important to the patients. We need to get all the disciplines that we can involve and use support groups. I have seen a fair amount of a less patients in my career, and I have had tremendous help from Alta. I know that there's Huntington's support group and there's a lot of other support groups we could um, that the families could draw help from. We need to include complimentary disciplines, music therapy, spirituals therapy wherever it's available. And we need to be good about interdisciplinary communication between nursing and the medical team between nursing and the social worker. And this is a for all these disciplines. It's a two way streets, and a lot of patients really benefit from spiritually care. I recently had a patient who was collect not to fund of spiritual care because she did not feels she needed. So I told her, You know what? Why don't I have the Chapman stop by and have a chat with you? And that was probably one of the best things I had done for her. There are outpatient policy care programs or Palace in medicine program. Um, when and we need to get into the mindset that palace in medicine is not the last resort. Nor is it the same as hospice. Yeah, caregiver burden. Taking care of somebody with progressive neurological disorders. I cannot even begin to imagine how challenging that might be. It what? It might be surprising that it's probably more, um, complex for neurological patients, and it is compared to when you compared to cancer patients because with the neurological disorders, behavioral psychiatric movement and cognitive disorders, that is an issue, Um, for patients that has the more in your own diseases off often demoralization, depression, hopelessness, suicidal at the ideation in the patient, which then spill over to the family and ends up being a caregiver burden, often because some of these patients are young at the age of about outset, when when they this he starts, um, there is potential for anti anticipatory grief and complicated bereavement. Given the nature of the disease again because they are younger patients, there's a role changing the family structure, and they're often financial challenges involved. So why should we control Palace of Medicine? I think this is a little bit of a repeat of what Rob said, but I think we need to think about focus on symptoms and quality of life rather than the illness itself. Um, Palace of Medicine is complementary to the team, and we focus mawr on the quality of life than the treatment or modification of the disease. We are there when treatment is no longer available and cold, so care needs to be shifted. You don't need just to get us to come in and need to introduce it and new service. We're able to help with complex conversation and communication between the treating team and the patient and the caregiver us. There's a lot of papers that I see that, um, advocate the use of Palace of medicine in neurology because we can complement the skills said that urologist and neurological nurses have, and that ultimately will lead to enhance care and increase patient satisfaction. Many years ago, I came across this article in a Dutch newspaper called The Telegraph, and I found this to be pretty thought provoking in many ways because when you think about it, the suffering of a long terminal illness is not at all waste. Nothing that creates such tenderness can be. It all wastes as a destroyer, and you can put whatever seriously illness in there. It is second to none, but it's also a healer on agent of healing I've had over the years. Families telling me is like because we had cancer stroke, Ailes named the disease. We've had conversations, my wife and I, my Children. I, um, that we would otherwise never have had I'm gonna spend a little time on spend the patients in the neuro I C. U. And we talked about this onset of illness. The onset of illness is when often a catastrophic event happens. We has a penalty cat team have some unique challenges because there's off often a very complex group of patients that we see. They not only have the neurological issues, but they also have other medical conditions and the care on, and that makes the care of these patients really unique. It provides a unique, multidisciplinary opportunity I and and one of the challenges that we have is that the patients in the I C. U especially then your issue because the cognitive outcome could be challenged. And so people are distraught, angry, sad, better and the list goes on. There's a need for high level communication because frequently significant decisions need to be made. So where do we fit in? We have the luxury of having ongoing conversations with the family because our time commitment is such that we can spend more time with the patients. We can help mhm developing goals of care. We can assist the bedside nursing staff, take time away from them, too, so they could take care of the patients. And we can be there to support the patients and the family. In the time of crisis course, in collaboration with the primary team and their consultants, we helped develop goals or care, present whatever options the family needs to be presented. And if patient is capable of being part of the concept. Part of the conversation they are, of course, involves We need to take into all the medical facts into consideration. And would that get the goals of care developed? This is not a five minute conversation. This is often an hour and multiple times conversation. I think one of the things that I always bring up two nurses and two families that most people only listen here about 5% of what we tell them. As we're going through goals of care development, I often use a framework where I asked four questions. The first question is, what can we do? Reverses. What should we dio? I don't have the answer for that. The patients and the family does all the things that we're doing. Are we doing those for the patient or to the patient and then the third question is in conjunction with that. What would be Mawr important to the patient, how long he is she lives, or how well he is? She lives. And finally, what I use is the question. If you loved one, was part of this meeting and could speak for him or herself and knew what you know now, what do you think he issue would say when you asked that questions? You will often find out that people have had conversations, and the family do know what the patient wants put in order to make that decision and tell what the patient wants. We need to summarize what they actual processes and what the likely outcome also might be. Okay, when you look at the outcome data with or without palace medicine, Rob. So like, talked a little bit about that. But I think there's some other things that's important. People don't come to. The hospital is often they don't come to the emergency room that often, and I think that with the pandemic, we kind of like stay away from the emergency room. The problem. The other problem is that when you refer people late, £2 of here. People are more likely to die in the hospital than they were if they were at home. Um, a lot of people, most people I would say, is my experience would like to end their life a home. I think that overall, the feedback in the papers that I've read is that this a lot of talk about improved communication, which in turn lead to a less anxiety and depression in the family members. It also results. In short, I see you state and then there's some controversy whether it actually saves money or not. But it's being brought up on a regular basis. I want to thank you for your attention. I want to thank you all for what you do and for being who you are. I'm certainly willing to ask questions after the presentation. And if somebody wants to email me, my email is with a little type of, uh, yeah dot France and ed you h hospitals dot org's. Frequently we get the question. Do you have anything you're writing? And recently we got a poster which is just a sheet of paper, and this is what it looks like and I just wanna leave my talk with that. I thank you for your attention, and I'll be open for questions Created by
