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Hello. Welcome to the monthly HCCI webinar and virtual office hours. Today's webinar is entitled Intersection of Faith and Community Organizing in Advanced Illness Care during COVID-19. My name is Danielle Feinberg, HCCI's Coordinator for Education and Research, and I will be your moderator for this event. This event is presented in collaboration with the Coalition to Transform Advanced Care, also known as CTAC. Before we begin, I'd like to cover a few housekeeping items with you. All participants are muted, but please use the chat or questions boxes located on your screen to submit questions and comments. Questions that are submitted will be answered when we transition into the virtual office hours portion of the webinar. The recording of the webinar, slide presentation, and the transcribed Q&A will be made available on the HCCI Intelligence page within several days following the webinar. Today we are joined by Elder Angela Overton, Senior Advisor to the Interfaith and Diversity Workgroup, CTAC. Reverend Dale Susan Edmonds, Pastor, Trinity United Church of Christ. Gloria Thomas-Anderson, Ph.D., LMSW, Founder and President, HeartTowns. And Lauren Belladreza, I believe I said it incorrectly, I apologize, Faith and Community Outreach Manager, Interfaith Community Service. Our objectives for today's webinar are as follows. One, to discuss the role of faith leaders in supporting those in their communities affected by serious illness. Two, explore how faith leaders can engage with parishioners affected by serious illness. And three, share strategies with community organizations that they can use to engage with faith communities. I'd now like to turn it over to Elder Angela Overton. Thanks for having me here today. It is an absolute pleasure to be with all of you to discuss the subject of intersection of faith and community organizing for persons and their caregivers who are critically ill. Particularly in this moment of COVID-19 and the eye-opening revelation that we are mortal beings and the light COVID-19 has shined on health inequities, particularly for black and brown people. The mission of a coalition to transform advanced care, CTAHC, is dedicated to the ideal that all Americans with advanced illness receive comprehensive, high-quality person and family-centered care that is consistent with their goals and values and honors their dignity. We will achieve this by empowering consumers, changing the health delivery system, improving public and private policy, and enhancing provider capacity. We are a nonprofit, nonpartisan organization based in Washington, D.C. We're funded by grants and the support of our members. And I encourage all listeners to visit our website at thectahc.org to learn more about us, our members, and what we have our hands to. So who we are. So who is CTAHC? We are everyday people. We are clinicians. We are CEOs, CFOs, directors, managers, essential workers. We are educators. We are clergy. We are community liaisons. We are patients and caregivers who are dealing with advanced illness that is all-encompassing of joy, struggles, and trauma. And we are all interested in ensuring that those who are seriously ill experience the best quality of life that they can have. Dr. Gloria White-Hammond, pastor, professor, and physician, and who I consider to be a wonderful mentor and friend, she said to me once, you know, Angela, if folks are experiencing a poor quality of life at the end of life, it is because they have experienced a poor quality of life. I believe we all have a hand in this. It is unquestionable that if we come together and unite with one concern, and that is providing excellent care for those in whom we serve, as well as those that we should be serving, we would create a better healthcare system for all. CTAHC is learning and creating best practices, models of care, templates. We are a conduit and a catalyst. We work with community coalitions to amplify services of appropriate clinical care, on the ground community social support, and decision-making planning centered on the patient's goals and values, particularly for the most sickest and most vulnerable. Not only do we profess, but we are encompassed of individuals that is doing the work. We are striving to create a community ecosystem that interconnects clinical and community support that is centered on aiding patients and their families navigate receiving care that is informed by their wishes. So our work, our work encompasses policy and advocacy, family caregiver support, state and community organizing, and the interfaith and diversity work group. And regarding policy and advocacy, CTAHC pursues a comprehensive policy agenda to help guide advocacy initiatives, including delivery system reform, preference driven care, caregiver and consumer support, and professional engagement regarding family caregiver support. And I can speak from this personally. As a caregiver, I would not make it without community based organizations. I would not have made it or continue to make it without the support of my faith community. And I would not make it with caring clinical advisors and those who tend to the needs of the loved ones that I take care of. So having a family caregiver is among the biggest determinants of the quality of care that a person with advanced illness receives. But caregiving can present a variety of challenges. And I know that I'm not the only one on this call who has taken care of a loved one. So speaking to all in this moment, not only do we have a stake at the improvement of caregiver support, but not only do we make it better for our community, but we make it better for ourselves. We provide support by being a disseminator of caregiver resources. CTAHC has caregiver fellowships. We are engaged in caregiver research. We coordinate webinars for caregivers that bridge the gap and facilitate conversations that move toward action and actualization of services and resources. Most importantly, we listen. And regarding state and community organizing, it is our effort to engage community that is on the ground. What a profit is our work if we do not get to the people? And so in this example, CTAHC has developed a handbook designed to guide individuals and groups across the United States through this process of developing and strengthening partnerships on the state and local level. Our community engagement toolkit companion guide provides step-by-step advice on a variety of subjects, including building a leadership team, defining your value proposition, developing an outreach strategy, building consensus through storytelling, and measuring your impact. And so the love of my life right now is the Interfaith and Diversity Work Group. And I have the distinct privilege and pleasure in overseeing this component of CTAHC. And the Interfaith and Diversity Work Group, we build relationships with faith communities. The Interfaith and Diversity Work Group is encompassed of faith leaders from all traditions throughout the U.S. We come together quarterly, and our steering committee comes together monthly, and we attend CTAHC's annual summit on advanced illness in October. When we convene, we learn, we share, engage in critical compilations, and proceed in linking hand in hand to lift our community. IDWG is a critical aspect of working out CTAHC's mission. Faith leaders have deep-rooted relationships within their places of worship and are uniquely positioned to provide crucial guidance and resources to those who live with advanced illness and their families. Amid COVID-19, they are now faced with reaching their congregants in this moment of social distancing. Zoom, webinars, Facebook, YouTube, Twitter, podcasts, emails, DVDs in the mail, and picking up the phone has been our way of communicating in this moment. We still must serve those whom God, our divine, has entrusted us to serve. It is our duty, our honor, and privilege to check in and help those who are experiencing pre-existing illness and chronic disease in navigating healthcare in this moment while offering spiritual support. We know this is not the time to let up in our service. In fact, here at CTAHC, we have been busier than ever in supporting those faith leaders who provide support to those who are in this moment touched by serious illness. We're partnering with faith leaders and community-based organizations and major foundations, disseminating templates for caregiver service and focus group forums and checklists amid COVID-19 so that we are setting an agenda and aligning ourselves up with the resources that we have access to. We're also learning the resources that we don't have access to, and what is our role in that in reference to faith leaders and engagement nationally and locally. In our policy forum this year in 2020 that we held just a little bit over a few weeks ago, our main focus really had to do with health equity, and it had to do with the conversation of raising the bar so that everyone is receiving comprehensive care as it relates to their goals. We're creating even a model of care in Louisville that's working on spiritual leaders to develop partnerships with health systems and helping those with advanced illness and their family caregivers navigate the situation that they are in. All of which the workgroup members have had a hand in, and this is a great segue to the next segment of this discussion. Dr. Gloria Anderson, Reverend Dale Susan Edmonds, and Mrs. Lauren Valadares are all interfaith and diversity workgroup members who are active and have been active in this collective effort. I'm proud to work with them. I'm proud to engage with them as I am proud to work with the Home-Centered Care Institute. I really do appreciate you having me here today, providing me with the opportunity to share. I feel honored to play a role in the collective effort to improve healthcare for everyone in our nation. COVID-19 has shined a light on how essential it is to get our affairs in order, and it's not just the patient that needs to get their affairs in order. We all need to work on doing better, and so there are still disparities that still exist in America, and we all have a hand in this, improving care for those who are experiencing illness, and we all must work towards ensuring that all people receive the best care there is to offer. Thank you so much. Good afternoon. I am Reverend Dale Susan Edmonds, and I am pastor at Trinity United Church of Christ in Deerfield, Illinois, which is a northern suburb of Chicago, and also the founder and director of talkearlytalkoften.com. This is really a unique moment for us as we have this emergence of COVID-19 out of nowhere. Just think back to December when we were all leading normal lives and things, you know, kind of we, you know, had on our to-do list what we were already expecting, and by March our world had changed. It really came as something of a shock to our system, and so this idea of seeing around corners really is one that I have developed to help us think about such a moment as this. The shock to our system was that we're no longer able to go through our daily denial that, you know, life goes on forever unchanged, that all of the world at once got slapped with the idea of the fragility of life and lulled out, you know, had a wake-up call to lull us, to get us out of our lull, and the idea that of our collective and shared vulnerability. There's a way in which many of us can feel overwhelmed and helpless because this disease comes out of nowhere, strikes with such ferocity, and sometimes leads to outcomes that nobody has control over, and so what we're trying to do is to help all of us that are on this call today recognize that we, in our roles in our various organizations, really can help get in front of this and help people understand that they're really not helpless, that we as leaders in our organizations can help people understand that there's a way in which they can be empowered even in such a time as this. The image that I like to use is that we, the idea of seeing around corners really is that idea of when you come to, you're driving through the mountains, no one is going to resist that idea of having a mirror around the blind curve to see the truck that may be barreling down a narrow road. All of us are helped to see that there's something coming at us that with just a little bit of advance warning, we can be prepared to understand what kind of a tactic we need to get to prepare for what's coming at us, and so what I've done with this idea is really to help people in a variety of ways understand that there are things that we can do to prepare in terms of having conversations with one another that really do change the impact, that really do change the trajectory of our future. So how do clergy fit into this? How do faith leaders fit into this? This is a new role for a lot of people. We have traditional pastoral care roles, but since 1991 with the advent of the Patient Self-Determination Act, clergy kind of find ourselves in the midst of having to help people navigate conversations that no other generation has ever had to help before, have before. We've never had to help people make decisions about end-of-life choices, advanced directives, working through things that no clergy was trained for in seminary, and so this is a brand new role that they are having to be thrust in the middle of, but it's such an important role. Clergy and faith leaders are in a unique place to help the members in their congregations have conversations that really display a confident faith. What I like to say when I'm presenting to clergy groups is that we're really good at talking about what happens after death, a concept in the Christian faith of life after death. We're very fluent in talking about that. We just don't like to talk about how we get there, and so we all hope for the best. We hope that there's not going to be some emergency in our families, but hope is not a plan, and so we as faith leaders have an opportunity to have families get prepared in a way that they are better able to confront the emergencies that come at them. Even outside of COVID-19, the regular emergencies still happen. People still have different diseases and health concerns that cause them to be experiencing various disease trajectories that are going to require different decisions along the way. There are still heart attacks. There are still all kinds of emergencies, and the role of faith leaders in this is really, I think, an important and a simple one. It's to normalize the conversations about the emergencies that are going to happen so that if you're talking to somebody about advanced directives, it's just as normal as if the lights go out, do you know where the flashlight is? We want to make these conversations just as normal as that, so I want to have us think about how we help families to get the team ready, get their team ready. If you look around your own organization or think about have clergy or faith leaders look at their congregations, there are so many people that really are living alone these days, that are especially in kind of this COVID time isolated from other people as they're living alone and told to shelter in place. There's a term, especially for the elderly, who when there aren't connections, there's a term, unbefriended elders, or a term that I really hate, elder orphans, but the idea that people that don't have obvious social connections, one role, important role of us in all of our organizations is make sure that people are prepared for any emergency that comes their way. If that person, if someone were to become ill, life falls apart. In other words, what are the roles, asking these questions, what are the roles that you're responsible for? What are things that wouldn't get done if you were unable to do them? If you become ill, who else needs to know? Here's a place where you can make sure that you have written down somewhere important contact information, especially for family members. We had an emergency, I went to visit someone in a couple different congregations, knocked on a door, people weren't there for a couple days in a row, we didn't even have a record. We knew they had adult children, we didn't have full contact information to be able to call them and find out where they were and what was going on. So basic contact information, who knows where your spare key is if somebody needs to get in your house? If you become ill, where are the papers? How do you pay your bills? Where do people find that information to keep things going for you, incapacitated, even temporarily? And finally, if you become ill, who would know what you want if you're unable to speak on your behalf? I know we're going to be talking more later on in this presentation about the role of advanced directives, that idea of having a health care power of attorney, that idea of having a power of attorney for finances. So important to have those people in place ahead of time, so that if there is an emergency, you have answered all of those questions. You've gone a long way to making people have a sense of having some things progress in a way and not people feeling helpless and overwhelmed. So finally, the idea of navigating uncertainty. Certainly, many of us have in a way been kind of hiding our eyes to the realities of the difficulties and the uncertainties of life. But if we're able to use this moment of COVID-19 to really catch up and kind of get ahead of the game, there's certainly a lot of things that clergy need to know. And as they are able to identify partners in the community and people that they can ask the questions that they need to have answered, that they can help their congregants, the members of their congregations, feel more empowered to ask their own questions. That the more we talk about this, the sooner we talk about it, the more often that we talk about these issues. It really makes a difference in people's lives, making the decisions, being organized, being prepared for what comes ahead. If there's opportunities, all kinds of opportunities available for help, certainly at talkearlytalkoften.com, which has been going for about 10 years now. There are all kinds of resources if people wanna come and learn what conversations they need to be having, who they need to be having those conversations with to become part of their team and how to keep the conversation going. Thank you very much. And I look forward to being a part of this ongoing talk and educational process with all of you. Good evening, everyone. I'm Gloria Anderson, and I'd like to just start out by sharing a little background on what Heart Tones is and how my work intersects with faith and community organizing, specifically focusing on helping African-American faith leaders inform and educate their congregants on advanced illness care and planning. Next slide. Heart Tones began as an encouragement ministry, creating custom gifts, greeting cards, and books from my inspirational writings for caregivers and for those who were grieving the loss of loved ones. And we continue to offer those resources via our website. In 2006, I received a grant to create a patient education resource from my master's of social work thesis research on end-of-life care within the African-American population pictured on this slide, entitled the African-American Spiritual and Ethical Guide to End-of-Life Care, What Y'all Gonna Do With Me? It's now in its ninth edition with the special 2020 COVID-19 issue that was just published. But after I wrote the booklet in that same year, I experienced a sudden life-threatening illness that was misdiagnosed due to what was later determined as physician bias. When one of my doctors made assumptions about my condition based upon my race, which were inaccurate and nearly cost my life. I am grateful to God for a miraculous healing that has served as a platform for me to advocate and educate on advanced care illness within communities of color. I learned for myself that what I had read and researched about healthcare disparity and its root cause, structural racism, were constructs that many people of color are dealing with every single day, not only in healthcare, but in every area of societal life, including education, employment, and housing, just to name a few. For the past 14 years in my role as an educator and consultant, I've been passionately committed to helping healthcare providers become more culturally responsive to diverse patient care through facilitated trainings, also as well as helping community organizations and faith leaders of predominantly African-American congregations to advocate and prepare for unexpected healthcare situations that can lead to serious illness or death. I'm an active member of the African-American Advanced Care Planning Palliative Care Network. It's a group of advanced care planning and palliative care experts who advocate for greater access and participation of African-Americans and other communities of color that was started by the late Dr. Richard Payne, who was a pioneer and leader whose legacy work in advanced care planning with African-American faith communities is greatly respected throughout the country. I had the honor of working with Dr. Payne, the most recent being the Crossing Over Jordan ACP Initiative, where we held regional train-the-trainer sessions with pastors and senior church leadership teams in five states, where we reached over 700 people with about 25% completing advanced directive documents. Next slide, please. In discussing the role of faith leaders' support to those affected by serious illness in African-American communities, Hearttones conducted an online survey in 2018 with 72 faith leaders and community leaders to learn more about their knowledge level in dealing with advanced care planning and end-of-life issues within their congregations and communities. We wanted to find out what interventions they were using to help congregants in situations of serious illness and death. Nearly 87% saw their church's role as having a responsibility to assist their members in these matters. Only 14% currently offered ACP educational training and 86% did not. Mostly all of them, 90% saw a need in their congregations to provide a culturally relevant educational process to help their congregants learn more about healthcare decision-making related to advanced care planning and end-of-life options. Based on their responses, we developed the Let's Talk About ACP Educational Training Program that faith leaders can use in-house to help them engage their congregants on the basics of ACP, palliative care, and hospice care options, hopefully before there's ever a need to deal with serious illness. We also partnered with hospice organizations to provide the training toolkit to faith-based churches in their service areas as part of their outreach efforts to help bridge the mistrust gap that exists in healthcare due to unethical research and medical experiments in the past. Hartone's intersection with faith leaders and community organizations is primarily through the ACP planning tools that we have, the resources we offer, and that we've created that specifically address the cultural, historical, generational, and spiritual values within the African-American population. And information about those resources is housed on our website. Next slide. The need for ACP was major. It was major before COVID, and it's still very important, especially with the disproportionate number of black and brown people who are dying from it. I see it as an urgent need during the pandemic as well. I recently had an in-depth conversation with a bishop who oversees multiple churches, and I asked two specific questions about what his pastor's needs are since COVID-19 hit. And the first question is there, in the face of the pandemic, what do faith communities need most? His response was that the primary needs for the church and community right now are food and finances, food to resupply their empty food pantries, housing for the homeless and the evictions that are happening, access to testing, free community accessible testing, and also financial support for many of the essential workers are black and brown people and they've lost their jobs or receive less pay and have no health insurance. The second question was what are the pressing issues concerning them as faith leaders? And those were trying to figure out how to meet the needs of their communities, keeping their people safe from COVID and attending to the needs of the elderly. Most of you will agree with me that ACP is definitely a priority, but the greater priority right now for many poor and underserved people is survival. And that is existing concern that we can't ignore. Next slide. In closing, I want to point out that research has shown that faith communities are key in improving awareness of and participation in advanced care planning for healthcare decision-making throughout the lifespan in the black population. The black church is key as it plays a major role in connecting and sustaining a caring community. The black church is traditionally the most trusted institution many African-Americans rely on for their spiritual, their emotional and social needs to be met. The challenge right now is figuring out how those who want to help and have the capacity and resources to do that, to actually help those who are the most vulnerable in society during this pandemic. As for strategies to engage with faith communities of color, I recommend the five Cs, starting with just having a willingness to care, then choosing to connect, to reach out to those that need you, and then show support by contributing your time and resources to help meet those needs. Then deciding to commit, that means to build ongoing and strengthening partnerships with these community leaders. And lastly, becoming an advocate for equitable change, using positions of influence to promote the necessary policies and practices that will ensure equity for all people. Heart Tones is currently partnering with Montgomery Hospice in a collaborative effort to help meet the pressing needs of the African-American communities most devastated by COVID-19 in their communities. If you're interested in learning more about that work or want to talk with me about implementing a similar outreach with your organization please contact me directly via the email address on this slide. And thank you for the opportunity to be a part of this panel discussion today. Good afternoon, everyone. And thank you so much for the opportunity to share with you all. Gloria just spoke of some really important points that I will lead into as well here. My name is Lauren Valladares and I work with Interfaith Community Services based out of Tucson, Arizona. And ICS is essentially a partner organization that works with local communities of faith in Arizona not only to meet the spiritual needs of the people that we serve but often the physical needs as well. We complement the communities of faith in this endeavor to connect their congregants to community resources, providing many support services ourselves including financial assistance, caregiving services, food, and employment searching and support. And a huge part of what we do is working specifically with faith communities around advanced care planning and what that looks like within their congregations. We've been long involved with the Interfaith and Diversity Workgroup through CTAHC and we are honored to work alongside Angela and the entire group to look at how this work translates within communities of color, within disadvantaged communities and really looking at greater picture the communities that we all serve. So I think to start out, I'd like to just mention and briefly point out to you something that we all learned in our high school civics classrooms, Maslow's hierarchy of needs. And I know that there's been a lot of research and reminders around this right now. And this is what Gloria was just mentioning. We have to remember the communities that we're serving and where they are currently at. We have to meet them where they are. We have to remember to not treat the communities that we serve as a monolith, but rather remember that we all are coming from different places, both historically and also within our current context of the pandemic. We look at the updated version of the hierarchy here with Wi-Fi, which is debatable. But what I think is important to remember is that on a national level, we're talking about 13% of our population is in poverty. And that number varies greatly depending on the community that you live in and you serve. Being in poverty means that your every day, you're living on the bottom of the pyramid. When we can't advance up, we are stuck there. When we are thinking about where our next meal is coming from, we can't possibly think about how to protect ourselves and our loved ones from a pandemic. We have to remember that all of us, we're all in a place where we're, no matter where you are on this hierarchy, we are constantly getting kicked down to the bottom again to remember what our physiological needs are for ourselves or for our loved ones and the people that we're around. So imagine those, and some of us are in these positions of struggling to pay bills, worrying about childcare, living from paycheck to paycheck, prioritizing your payments. Those are things that the people that we serve are worried about on a day-to-day basis. We have to remember that. I'm also pointing out here, things that we are all familiar with, the social determinants of health. I would argue that a faith practice could be added as an 11th social determinative, or a ninth rather social determinative health. But when we look at the wide swaths of the population who are already starting at a disadvantage in housing or education or income or access to health, it's not hard to figure out why this pandemic is affecting those communities harder than others. So I wanna keep this in the back of our minds as we talk about community organizing in this time. And that's where I have specialty and in the work that I do, working with communities of faith, of different faiths to serve their community members. So remembering human connection is absolutely important. It doesn't look the same, but we haven't lost human connection. We just have to look in new places for it. And meeting people where they are. This is what I'm talking about when I say looking at the needs of each individual and each family as different than our own and recognizing that in order to be well, we have to be fed, we have to be housed, we have to be in some level of comfort to be able to consider everything above us. Next slide, please. So what is the role of faith in all of this? I like to compare the role of faith within the faith communities that we serve. It really, faith is serving as a cairn. If you're familiar with the rocks that stacked on top of one another from Arizona, and we see these all over the place when you're on a hiking trail. When it is unclear where to go, faith can serve as the cairn, as the direction, as the arrow to say, I think this is where I should be going. It can serve as a reminder for where our hearts tell us we should go. Faith can be a medicine for trauma and stress. It can also be a source of that. But those who have strong faith have an incredible tool to guide them through difficulty in a way that some of us don't. Looking at the percent of community participation and our interactions with our faith communities and the greater community in general, looking at where, who's serving, who is getting out even amidst the pandemic in within the capacity that they feel comfortable to help their neighbors. It depends on economic stability. Those people who can count on the next paycheck or are comfortable where they are in the lower tiers of the hierarchy are willing to help out in some capacity. So how do we tap into those areas to serve those that are just struggling to stay on the bottom? Some spaces of faith are closed. And in our situation right now, many are closed. But faith is up. There was a great study that was put out by Pew Research that in communities of color, faith is actually becoming more prevalent. This pandemic is being reframed through a hopeful lens. It's fostering a sense of connectedness, if not physical, then as a body. Connection through ritual, doing practices with knowing that someone on the other end is doing the same thing. These are things that people know that they have in their toolbox and are being able to use them in a way that is tying them to other members of their faith communities. Turning towards service, as I mentioned, as a way to practice faith. The Abrahamic Christian or the Abrahamic faith lines are turning towards service. How can we help our community? How can we love on our neighbors? How can we serve those, if not in the greater community, within our own community of faith? And those things are still possible. And a lot of those faith communities are turning inwards. How do we care for our members? Because that is what we've always done. And now is the time to even wrap around them even further. So the most important thing, I think, and Gloria touched on this a little bit, is, and you can see this in her work specifically, I just wanna highlight that this is the most appropriate way to approach, whether it be advanced care planning, whether it be figuring out someone's needs, is taking a temperature on what's going on within each community. So with a lot of faith communities, we have, a lot of faith communities have an audience already. And that is something that a lot of places have to work just to gather around their idea or around their project. A faith community is a place where there's an audience hungry for information. And faith leaders, we have to recognize, are in a very difficult place to be able to lead those congregations in a way that's only, not only taking care of themselves and their family, but also they're being looked to act as a leader for others at this moment, more than in previous times. So for those leaders out there who I would like to recognize you as you're in a deeply conflicted position these days, wanting to connect with people and yet Zoom, and here we are on a computer, you can still have these deep conversations. You can still find out the needs of the people that you serve by generating conversation and doing a survey, doing an informal survey, asking two questions to the bishop. Those pieces and tidbits of information when gathered over many conversations are a place from which you can start to build and coalesce and act. Asking in a Zoom meeting for a hand raise, we all use the comment box. These are just some of the things that we use within the context of our programs and where our population is currently moving within this pandemic and otherwise. Next slide, please. So to leave you all, I just wanted to remind you of the things that are available to us all right now. When we talk about meeting people where they are, if the faith community that you operate within or the community operate within is used to providing a service, providing a pathway, it's time to get out of the box a little bit and remember who you're serving. Food is a huge need for a lot of people right now. And there are a lot of food programs popping up around the nation. Do your people need food? Is there a way to reach people where they can feel supported throughout the month through a food program? Or is there another organization in the community doing that? Using the other community resources available to us all, I cannot stress that enough. We all can't do it all, but we do have really strong organizations, partners, collaborations within our communities that can do it and are just waiting for the phone call. So don't forget to include them in the conversation or take them into account as you consider your population's needs. We talk about prayer within a faith community. We talk about the different tools available, whether it be conversation project, whether it be Gloria Anderson's spiritual guide, there are things out there. It's a matter of digging and taking advantage of the time and somebody else's effort to be able to provide a full toolbox to those that you work with. We have all of these beautiful technology tools these days that we can use, that we may already be using to convey a certain message. Why can't we use it to get a better idea and take the temperature on what our communities need right now? So with that, I'll wrap up. And I just wanna reiterate that I'm so grateful to be with this panel of speakers today. And I look forward to any of the questions you all may have about community organization, working with faith leaders and what that looks like. Thank you. Thank you so much. I appreciate it. Okay, as we transition into our virtual office hours, I do also want to introduce two additional panelists that will be joining us today. Dr. Paul Chang, our Senior Medical and Practice Advisor for the Home Center Cared Institute and the Medical Director of Northwestern Medicine and Home Care Physicians. He may be having some connectivity issues. So as we're going through, if a question arises for him, we will ensure that either it's answered during here or afterwards and provided to you later. And also Brianna Plentzner, HCCI's Manager for Practice Improvement. So we have had quite a few questions submitted into us. And I want to take this time to share the questions with all of our panelists today and answer as many of them as possible. Okay, the first question is, what are the key points and how to address the differences in communities of color? And if it helps, this was in relation to the heart tones presentation. Okay. And would you repeat that? I, my thing wasn't there, so would you- Sure, what are the key points in how to address the differences in communities of color? Well, for me, I can only speak from what I've been doing and I found being an African American, of course I've grown up in the culture. And so I found that it's really important regardless of who you're working with to really, like Lauren said, you know, get the pulse of what they're doing, get their temperature, what do they need? People are different, even of the same ethnic group, they're different. There's different, you know, subgroups, if you will, within populations. So there's not a one size fit all, is what I'm saying. There are many ways to serve and help them. But mainly you need to know who you're talking with, what their needs are. And I believe that just starts from the heart. I believe that if you are wanting to help a particular group, you know, regardless of what ethnic group that is or what socioeconomic status they have, that you just start with from the heart. What is it that you can offer them? What are they asking for? What are their needs? That's what I would suggest. This is Lauren as well. I would just like to say as a person that works with so many different communities of faith and in so many spaces that a great quote that somebody told me that I use all the time is if you're not at the table, you're on the menu. If you don't have the community that you're representing around the table with you to come up with solutions and to have the conversations, you're not starting in the right place. You're not considering the fact that everyone needs a voice. So I would like to just say that too as somebody who, you know, where do we even start? Well, it's about sitting around the table, first of all, the same table to have difficult conversations or just have conversations in general that may not happen on a regular basis anyway. So I wanted to throw that in there. Thank you. This is Reverend Dale. Also I think I learned this as having been a hospice chaplain for a number of years with different people from all different types of backgrounds that the important thing is not to make assumptions that you know what's going to be important for that individual, that family, that faith community because everybody even within the same type of tradition translates things differently from their own perspective. So if we could let go of assumptions and go in, first of all, being open, being respectful, and then to be curious and not being afraid to ask the question directly. You know, I want to be helpful to you in this moment. I want to make sure that you have what you need. Tell me what this means for you. Tell me what's most important in this moment. How do you understand, you know, XYZ? And if we ask the questions with that kind of sincerity and willingness to follow up and make happen what they need, I think we'll be guided along the way by being in partnership with folks instead of trying to be, you know, pretend that we know what's good for them and then, you know, something happens that creates even further distrust. Yeah, I agree. Thanks, Dale Susan. Thank you. Next question. How are you going about making sure the advanced medical decisions are not trapped on paper and are available when needed by healthcare teams? This is Lauren, and I can speak to this, but I know there will be other thoughts on this as well. Within Arizona right now, particularly, we're part of a greater end-of-life care partnership that has specifically been asking this question for a while in terms of, you know, if I fill out my documents and they're in a file folder somewhere, how is anybody going to find them? There are some, there's some big movement, and Angela, you could probably speak more eloquently about this, but there's some big movement through CTAC to look at how to connect advanced directives to essentially the databases that hospitals and healthcare systems use. Specifically, within Arizona, there has been some significant legislation passed to incorporate a new form that is considered a medical order for healthcare professionals where within a certain setting, within a certain context, and within a certain, you know, within the context of someone's care, this medical form would be filled out, and that takes priority over anything, and that is, you know, linked to someone's health records at that hospital and in other areas of care. So there, at least within the context of our state, there are some things being done in that realm. Nationally, I'm not sure what is around that, but I think it is important to recognize that that is a concern. We all are having those concerns. What if we don't know where the papers are? This is Angela, and so I'd like to follow up to Lauren's response. If this is twofold, there is, or perhaps threefold, there is a personal responsibility, then I also believe there's a caregiver responsibility, as well as having these sort of conversations with your clinical provider. I do know, though, that sometimes it does not present itself because we find ourselves in emergency situations, but CTAS has a few policy asks, and one policy action that we are working on is to ensure that advanced care planning documentation executed validity in one state or honored in other states, i.e. essentially this means that there is reciprocity across states for eligible advanced care planning documentation, and that's found in the 115th, I believe, Congress Patient Choice and Quality Care Act that CTAS is advocating for. This really ensures that someone's advanced care planning documents follow them and remain valid wherever they go. This is important, and especially during COVID-19 emergencies, patients and families must be confident that their care goals and advanced care directors will be honored by providers and healthcare institutions, no matter in what state the directive was created. So the lack of state-to-state portability of advanced care planning documents has been identified surely as a major barrier to this effectiveness. So we should remedy this issue and take steps so that a person's documented values and treatment preferences go where they do and continue to serve as a crucial roadmap to frontline providers. I tell you, and then also, I cannot, you know, Dale Susan, she pounds this in. You must have conversations with everyone that is in your circle and help surrogacy identifying who will make those choices for you in the event that you are dealing with an emergency situation which causes you the inability to speak for yourself. If we do not have our affairs in order, if we have not had those conversations with our loved ones, in addition to having our papers in order, none of this, you don't know what situations you will find yourself in, and I hate to say it that way, but that is true. Thanks, Angela. This is Dale Susan. I just want to follow up on that and even expand it a little bit. I think even in light of all the kind of statewide and national efforts to see that they're transferred and follow the patient, I think there's an area in which all of our organizations and even in our congregations can help empower families to take charge of this, that one, encouraging them to complete the documents and have the conversations that they need to have, but then to make sure, as Angela said, that they've informed everybody around them, that they take the initiative to make sure that their primary care physician has a copy, to make sure that if there's a regular hospital that they visit, that those documents are in their hospital record there, ask the question. If you have a loved one in a nursing home, to make sure that you take the initiative to go to the nurse's station and make sure that your wishes are documented there and even ask them the question, hey, if my loved one is transferred to the hospital, how do these get to go from where your record to the hospital record and just kind of make them think about it ahead of time so that you know that those things will be provided for. So I think there are ways that individuals and families can also be proactive, as well as having your individual health care power of attorney have a copy of those that they have easily accessible at their fingertips, as well. Excellent. Thank you. We do have about six minutes left, so I just want to make everybody aware of this. We have quite a few questions, so we may go a couple minutes past 5 o'clock, just kind of give a heads up. How are people handling the conversations around following the advanced care plan versus doing everything to save someone, i.e. assuming everyone who gets COVID will be intubated and put in the ICU in the face of COVID, especially in light of sensitive, of the sensitive issue of different care for people of color? Can you repeat that? Sure. How are people handling the conversations around following the advanced care plan versus doing everything to save someone, for example, assuming everybody who gets COVID will be intubated and put in the ICU in the face of COVID, especially in light of the sensitive issue of different differential care for people of color? I can jump in on starting that one. This is Dale Susan. I think part of that really can start, again, from a role of faith leaders in terms of placing those conversations in the proper context. Sometimes people want to pit the idea of advanced care planning as antithetical to having faith in God. Those two things are not at odds with each other, that we definitely encourage and have confidence in our faith and in our God, but at the same time understand that there are decisions that, as human beings, have been put into our sphere. God isn't able to speak to us if a doctor asks a question. We have to be empowered to be able to have a conversation that reflects our best understanding of what a person's needs and wants would be. What I mean by that is what we can talk about in our churches is sometimes we have technologies that are able to keep people's hearts beating, to keep their breathing going in and out of them at a point that, in today's world, might be well past when that person is actually alive. We never had that ability in any other generation in history. If somebody's heart stopped beating, if somebody stopped breathing, they were dead. There was no alternative. We're the first generation ever that's had to make decisions about what is life and what is death and what is the quality of life. If we can begin to be emboldened within our congregations to have those conversations and saying that we're doing that in the context of having life and having it abundantly, which is what's promised to us in the Christian faith, that we can go a long way to being able to have those conversations alongside our faith and in the context of our faith and not as opposed to our faith. Thank you. I have found many pastors have no idea how to have these conversations and are not comfortable at all when approaching them about providing resources to them and their congregants. What is the best way as a white woman to overcome these fears? I'm an ally but sometimes find that the lack of relationship with everyone in the community is a barrier. How do I manage our health system's advanced care planning efforts? That's a really great question. It's very power packed. As a white person, I just did a webinar recently and a white clinician asked a similar question. I would just say, as I said to her, that because of the mistrust issues, especially in our communities, of African American communities, and even my own experience of having issues around assumptive thinking, I just feel like it's a lot to unpack. I don't think you can just give a one size fit all answer to any of that. I really don't. Not in just a minute. If you would like it, put that question into the chat box and after this is over, I'll be happy and I'm sure the others will be able to address it in a little more detail for you. But I really believe that it's not something you can just answer in a minute. Certainly, I can absolutely do that. How do we overcome the fear that advanced directives will be used inappropriately for patients, particularly for communities of color who know there are serious health disparities in normal times and even more so during COVID-19? This is Dale Susan. I think this question is so much related to the last question that part of what we've got to do, as opposed to, as Gloria was saying, as opposed to thinking we can answer the question, is make the commitment that we've got to work on these issues. They're not going to be solved in one conversation. They're not going to be solved in one educational program. But as we make the commitment and name out loud these things that we've just named in the last two questions, that as we gather communities at tables together, as we talked about before, to say, hey, we understand that we are part of a historically driven problem that we now have an urgency to work on together. And then you begin to have those conversations within the context of the community to see what's going to be the most appropriate way in that community to making headway around those issues. There may be some clergy in the area that are more comfortable and do have more background in some of these areas that can be served as leaders to urge other people to gather at the table. There may be some community organizations that have more developed personal relationships with certain congregations or certain clergy leaders that can take the leadership in kind of lifting up these issues. But I think it really, in order to address historical and systemic issues, we really are going to have to come together and kind of name this stuff out loud and be working at it together. So this is Angela. And I just want to piggyback off of what Gloria and Revendell Susan have said. This isn't going to be answered in the time that we have allotted. And also, and probably joining the two questions, the Interfaith and Diversity Workgroup, and as a pastor or as an associate, I'm very familiar with faith leaders who are well-versed in having these sort of conversations. And I'd also like to mention, and piggybacking off of Revendell Susan, if there is anyone who has ever experienced discrimination, it is another element that one has to add to the advance directive. Are there concerns that my desires, my wishes, and my needs for those individuals who have experienced discrimination, are there thoughts that, no, this is not going to be honored because I have experienced discrimination? Yes, it is. And so these answers and questions won't come overnight. And I also have to say, as long as we have institutions and organizations who are making decisions, even creating policy, without having these individuals at the table, there is going to be a misrepresentation, as well as the inability, if you will, to receive information from said organization. If this organization does not value the perspective of people who are a darker hue and are not at the table to make choices or decisions or to bring the essence, and it's not necessarily just for the benefit of people of color, having a diverse organization and having a diverse work group really has everything to do with that I value humanity. And so goals of care is one of the reference that I like to frame in regards to advance directive. Providing information so that individuals who are recipients of health care receive all of the information, and that is one of the things that CTAC does. We want to inform all audiences of what their options are. And after doing that, put in place, you know, whatever it may be, a living will, whatever it is, your advance directive, but that it maintains your desires. We can utilize language that doesn't put us in the frame where we're held to this when we are in the ER. So there's a lot to unpack in this. I'm like Gloria. I love to follow up with questions asked after. And this is Reverend Dale Susanning one more time. I think the other thing that we, I think as Interfaith and Diversity Working Group, also need, we're beginning a new podcast series that's going to be happening pretty soon, and I think what we need to do is to take all of these questions that have come up and we weren't able to address more fully here, as well as other questions that have been put to us, and really have more full conversations and papers and articles that are available to people because, you know, while we're talking, let's get everybody at the table, decisions are needing to happen right now. Conversations need to happen now. And so the more that we can do to get resources into your hands, we really are committed to making that happen right now. Okay. I want to say special thanks to our partners at CTAC on our presenters today. You have done an outstanding job not only providing your insight and expertise on this topic, but also answering questions that I am sure that we will send to you afterwards because these were very in-depth questions and we certainly want to be able to address them for all of our learners that attended today. I'd like to remind you of our resources. We have our hotlines, webinars, virtual office hours and tools and tip sheets, and then certainly every third Wednesday of the month, next month, August 19th, we have our Integrating Occupational Therapy into Home-Based Primary Care. Thank you so much to everyone for joining us today. I do apologize that it went over, but it was great conversation and I didn't want to just end it right there. I do wish you all the very best. Please stay safe, stay healthy, and until next month. Thank you. Thank you all.
Video Summary
The webinar titled "Intersection of Faith and Community Organizing in Advanced Illness Care during COVID-19" addressed the role of faith leaders in supporting those affected by serious illness, how faith leaders can engage with parishioners affected by serious illness, and strategies for community organizations to engage with faith communities. The webinar discussed the mission of the Coalition to Transform Advanced Care (CTAC) and the importance of providing comprehensive, high-quality care that aligns with the goals and values of patients and their families. The speakers emphasized the role of faith leaders in providing crucial guidance and resources to those living with advanced illness and their families, especially during the COVID-19 pandemic. They discussed the need for caregiver support and the importance of community engagement in improving healthcare delivery for those experiencing illness. The panelists also highlighted the need for policy reform and advocacy to address health disparities and ensure equitable access to quality care. They stressed the importance of having conversations about advanced care planning and documented preferences for healthcare, as well as ensuring the portability of these documents across state lines. The panelists also discussed the challenges and opportunities to engage with communities of color and emphasized the need for cultural competence and respectful communication. They encouraged collaboration and partnership between community organizations, faith leaders, and healthcare providers to address the unique needs of diverse populations and improve healthcare outcomes for all.
Keywords
Intersection of Faith and Community Organizing
faith leaders
advanced illness care
COVID-19
community organizations
Coalition to Transform Advanced Care (CTAC)
comprehensive care
patient goals and values
health disparities
cultural competence
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